Correspondence

IBCA Community Update, 2 April 2025

Published 2 April 2025

1. Introduction

Hello, and welcome to April’s community update newsletter. This month we cover:

• Increasing the number of claims from April
• Starting claims for those who are nearing the end of their lives
• Using feedback to design the compensation service
• An update on the second regulations
• Legal support when you start your claim
• Support schemes update
• Our next webinar to answer your questions
• Questions and answers

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

2. Increasing the number of claims from April

Our commitment was to start at least 250 claims by the end of March 2025. You can see the latest figures for the number of claims on our website. This shows that 255 people were able to start their claim as of Friday 14 March. 

As you’ll remember from our update on 10 February about how we’ll open the service more widely, our immediate plan is to continue compensation claims for those who are living infected and registered with a support scheme.

We will continue sending invitations to people in this group, and from mid April we will contact all those who are infected and already registered with a support scheme to confirm we have their details.

3. Starting claims for those who are nearing the end of their lives

When we contact people who are infected and already registered with a support scheme, we will also ask those who are nearing the end of their life to contact us so we can prioritise 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, the email or letter will explain more about the information you need to provide when you contact us.

We are doing this because when we asked members of the infected blood community how we should decide which claims should be processed and in which order while we build the service, prioritising those nearing the end of their lives was the suggestion most people agreed on.

We will continue asking people who are infected and registered with a scheme to start their claim until we have responses from those nearing the end of their lives. Once we have these responses, these claims will be prioritised.

4. Using feedback to build the service and support those claiming 

When designing the claim service, we’re adapting and improving how we work based on feedback. Here are some important things we’ve learned and changed. 

• Ensuring we have the right information for each claim - While we have received a lot of data from the support schemes (current and existing), for many cases we still need more information. Specifically, we need more infection data for the calculation, including year of infection, year of diagnosis (for HIV and Hepatitis C), and years of changes in infection severity (for hepatitis). We ask the person claiming if they already hold the information themselves, and if not, we ask the professionals providing their infection-related care for the specific information we need. The person making the claim does not need to get this data themselves. We are here to help.

We work closely with clinicians so they know what information we’ll need to process claims and to make them aware of the importance of speed in this process, making sure doctors, consultants and others understand why we need this information. We also work with key organisations so we can access information more quickly, such as the National Haemophilia Database.

• Protecting those claiming from fraud - We are always mindful of the importance of protecting people, and public money, from fraudsters. We continue to strengthen our identity verification process with crucial checks at the beginning of a claim, rather than just before the payment is made.

• Seeking community views on how we reach everyone eligible for compensation in the future. While we focus on those who we know are waiting for compensation now, we also need to plan for future work to reach those who may not know they are eligible to claim. We’ve recently run sessions with community representatives on how we might do this in the coming years, including through paid advertising. Although we do not need to reach these people yet (and may not for at least another year) we do need to start the planning work, and community members have been helping us understand how we might do this in future. Feedback includes reaching those who may not be diagnosed yet, working more closely with healthcare providers and understanding the size of audiences who are not registered and might still be unknown to us. Our mission is to make sure each and every person who’s eligible for compensation is paid, but we have no immediate plans to start a campaign, as we first focus on payments for people we already know about. 

Linked to this, we’re also sending a survey to everyone who’s previously told us they are interested in helping with IBCA research. The survey is being managed by IPSOS UK, an independent research agency, and will ask for information to help us develop and improve our services. If you’d like to be involved in future surveys you can sign up here.

5. Second compensation regulations in force

The 2025 Regulations for the Infected Blood Compensation Scheme are now in force (from Monday 31 March). These regulations give IBCA all the powers we need to make compensation payments to people who are eligible. 

They bring together the 2024 regulations and extend the scheme to include people who are affected (for example parents, siblings and carers). They also establish a route for supplementary compensation and include details of how people can return to the scheme if their condition worsens.

You can read more about the regulations in the government’s explainer on gov.uk, there is also a new user friendly explainer (PDF, 1,152KB). We have also updated the IBCA website and will continue adding more information about what this means for people making a claim as we work through the regulations further.

6. Legal support when you start your claim 

We recognise some people may want legal advice when making their compensation claim. We are working with approved legal companies that have previous experience of supporting the infected blood community and fully understand the compensation scheme’s regulations.

When you start your compensation claim, you’ll be offered independent legal support, paid for by IBCA, from one of these companies. If you already have legal support and the company is one of these, or has signed up to IBCA’s terms and conditions, you can use them.

To be aware, you may see adverts or be approached by legal firms offering to support you on a ‘no win, no fee’ basis before you start a claim. It is your choice whether to take this up, however please be reassured that we can offer support from the start of your claim with approved legal providers, at no cost to you. 

6.1 What can you expect from the legal support we offer?

Firstly, the legal support is independent from IBCA. We’ll offer you a selection of solicitors to choose from and pay any fees directly to the company. 

Regardless of the outcome of your claim, you will not pay anything out of your compensation. 

This free support only applies to your compensation claim, not things that might come after your claim, like inheritance tax or probate. 

6.2 What does the legal support include?

The support covers:

• help to confirm the information used to calculate your compensation is correct; 
• advice on whether your compensation offer has been calculated correctly and whether you should ask IBCA to review the decision;
• support  with an internal review, if you request one;
• offer to share information on your behalf, if we ask for it.

You can still get legal support for other reasons, but it will not be paid for by IBCA. 

7. Infected Blood Support Schemes have now closed to new registrations

On 31 March, the four UK-wide Infected Blood Support Schemes (IBSS) closed to new applications.

This is with the exception of where an existing infected scheme member dies between 1 January and 31 March 2025 (their estate will then have three months from the date of death to apply for a lump sum payment). Newly-bereaved partners of existing infected scheme members who died between 1 January and 31 March 2025 will also have three months from the date of death to apply for support payments.

The schemes will continue accepting applications for interim payments to estates.

While the support schemes have closed for new registrations, if you already successfully applied, your payments will continue. You will still be able to contact your scheme as usual to talk about your payments. 

When you start your compensation claim with IBCA, your claim manager will explain the options available for continuing with support scheme payments. You do not need to do anything now. We will let you know when you can start your claim with IBCA and what your options are. There is more information about the regulations and what they mean for you in the government’s explainer on gov.uk.

7.1 What this means for people making a claim after 31 March 2025

If you’re not registered with one of the support schemes, we‘ll keep you updated about when we’re opening compensation claims for unregistered infected people and other groups through this newsletter. 

If you receive payments from a support scheme, please make sure your contact details are up to date so we can contact you too. 

8. Put your questions to IBCA - our next webinar

Our next webinar is planned for Tuesday 15 April at 5pm. This event is open to everyone and we’ll share a link to the webinar and Slido, where you can post your questions, on our X and Facebook pages before the session. We will also share via community groups.

9. Questions and answers

9.1 What should I use as my date of infection in the compensation calculator?

The date of infection is the date you first received treatment with a contaminated blood product, that then led to your infection. 

We know it’s not always possible to find out which treatment first resulted in an infection.

That’s why, if you do not have the exact details, you should enter the year you were first given a blood product into the calculator. If you do not have this evidence, do not worry. Your Claim Manager will support you when you start your claim. 

9.2 Will the £100,000 interim compensation payments given to bereaved partners be deducted from their claim or from the estate of the infected person? 

Interim compensation payments of £100,000 were made to bereaved partners registered with an existing support scheme in 2022. As the payments were made directly to bereaved partners they will be deducted from their own claim and not from the estate of the infected person.  If you pass away prior to your compensation being paid, your estate does not have to pay back any interim compensation that was previously received.

10. A quick reminder - please be aware of fraud 

We’re putting ways of preventing, detecting and addressing fraud in place so we can ensure compensation reaches only the people who are eligible.

Contact us if you’re concerned about a message or phone call and want to check if it’s from us, or if you have a general fraud query related to IBCA. You can call 0141 726 2397 or email fraud@ibca.org.uk.

If you’ve been a victim of fraud or cyber crime, report it via the Action Fraud website or by calling 0300 123 2040. In Scotland, contact the police by calling 101. You should also report it to your bank immediately.

11. 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.