Correspondence

IBCA Community Update, 08 January 2025

Published 8 January 2025

Hello,

Welcome to our first update of 2025. In this you’ll find information about what we’re learning from making the first payments, work on a compensation calculator, an introduction to user consultants and your recent questions and answers.

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

Learning from the first compensation payments

So far we have made the first compensation offers to 10 people with a total value of more than £13 million. More people in the first group are also now progressing their claims. Some are making use of the IBCA-funded financial and legal support to consider their options, and some are still working through additional evidence before receiving their compensation offer.

In December, we opened claims to a further group of 25 people. By the end of March, we plan to have brought in around 250 people to claim, increasing to larger numbers after that.  

As part of our approach to starting small and building the claim service as we go, we’re already learning lessons from these first claims. These include:

• Some claims are taking longer to finalise because we need more or different information in order to make an accurate calculation. In each case, we’re working with the person who is claiming to agree on how and where we find the right information. This is helping us learn how we can speed up claims in future. 
• A small number of invites to claim have not yet been responded to, or accepted. This means that the number of offers made won’t always match the number of invites sent. 
• For some people, it can be useful to take more time to consider a compensation offer and seek further advice. Feedback tells us that offering legal and financial advice, paid for by IBCA, has been useful to those claiming. Anyone claiming has up to three months to make a decision about their claim after they receive the offer.

We will open the full compensation service as soon as we can, although claim and payment timings will depend on a number of things. This includes how the service performs as we build it, getting the right evidence and support in place and regulations being laid in Parliament. We’ll continue to work closely with the community about how we design and grow the compensation claim service.

IBCA compensation calculator

We know from feedback that those claiming would find it useful to understand more about how the compensation calculation is made, both before making a claim and during the process.

We have updated our website pages at www.ibca.org.uk so that everyone can see how we’ll support you with your claim and what we consider in a calculation. 

Based on feedback from the community, we are also developing a calculator to help people understand what they’re eligible for. We expect this will be ready to use by early March. We are designing and testing this with people who have volunteered to be part of user research.

Initially, the calculator will be for those who are infected or claiming for an estate. We will develop the calculator further for those who are affected after the second set of regulations are laid in Parliament. 

User consultants have joined the IBCA team

As part of our commitment to users being at the heart of the compensation claim service, we have appointed three user consultants who are members of the infected blood community. They will advise on how IBCA’s processes and plans can be focused on the needs of those who will be applying for compensation.

 Their role includes:

• Helping to design and improve training for IBCA colleagues to ensure we understand the experience of our users and how best to respond to their needs.
• Helping IBCA teams understand what is needed in the design and development of the compensation service, alongside users who are testing our service.
• Using their experience, alongside many others in the community, to understand the impact of our work and how we can improve our engagement and communications.

We know that three people cannot, and should not, represent views across the community. We’ll continue to hear from people through our regular meetings, engagement sessions and wider user testing  as we build the claim service.

The user consultants are: Clair Walton, co-founder of Positive Women, a campaign group for the wives, partners and widows who were infected with HIV alongside their husbands or partners in the haemophilia community; Susan Harris (previously Stretch), who served as vice chair on the board of trustees for the Haemophilia Society working closely with the public inquiry sub-committee and the All-Party Parliamentary Group (APPG), she has also worked with the Hepatitis C Trust for the last five years as their lead on infected blood; and Jason Evans, who was previously a director of Factor 8, an infected blood scandal campaign organisation.

The user consultant role was advertised externally so that anyone could apply, and sought candidates who had both direct experience of the impact of infected blood. Alongside professional experience in a communications, consultancy and/or advisory role at a senior level. 

We will post their full biographies on our website today.

Recent questions and answers

What happens if I don’t know the exact date of my infection?

Several people have been in touch to ask us about how the date of infection (including HIV, Hepatitis B and Hepatitis C) will be agreed upon for those who received multiple blood products.

We know that many of those with haemophilia or other bleeding disorders have received dozens or even hundreds of different blood products, and because of the quantity and variety of blood products many received, it is not always possible to know which specific treatment first transmitted infection.

If it is not possible to establish the year in which the infection was contracted, the year in which the first blood product was received will be taken as the infection year. (this is set out in the regulations). 

Where a person has a co-infection, we will use the year of the first infection to calculate a Care Award and Financial Loss Award. This includes Estate claims.

What do you mean by ‘blood product’?

Blood products include Factor VIII, Factor IX, Cryoprecipitate, FFP (Fresh Frozen Plasma) or other blood products which transmit Hepatitis. The first blood product received does not have to be Factor VIII or IX. For example, if the first blood product an eligible infected person received was Cryoprecipitate, then the year Cryoprecipitate was received will be accepted as the hepatitis infection year.

What about blood transfusions?

Many of those infected via blood transfusion received one or a small number of transfusions which means the year of infection can be confirmed. For example, the year of infection might be when the transfusion(s) were given during a specific event such as childbirth, an operation or following an accident. Where there were multiple or many transfusions and the year of infection cannot be established, IBCA will accept the earliest year in which a person could have contracted the infection.

When will you know more about what’s happening to the IBSS Special Category Mechanism (SCM) regular payments?

If you have Hepatitis C stage 1 and are registered with a support scheme, you can currently apply for a Special Category Mechanism (SCM). The SCM recognises the impact of your infection and linked conditions and the effects of treatment, and could mean you currently receive higher annual payments.

The second set of compensation scheme regulations, due to be laid in Parliament by the end of March, will set out the details of the supplementary health impact route. This supplementary route is designed to recognise the health impacts relating to HIV, Hepatitis B or Hepatitis C infections where the financial loss and care needs of infected applicants may not sufficiently be compensated for under the core route. 

Launching IBCA Facebook and LinkedIn

We already have a social media channel on X (@IBCA_UK). Soon, we will launch a Facebook and a LinkedIn channel, as recent feedback from community members has told us this would be useful to further share information.

We know many members of the community use Facebook in particular, which is why we are launching these channels to make sure as many of you as possible get the latest news and updates from us.

You can also view updates on our website: www.ibca.org.uk.

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.

A quick reminder - please be aware of fraud 

We’re putting in place ways of preventing, detecting and addressing fraudulent activity 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 you have a general fraud query: fraud@ibca.org.uk.

If you’ve been a victim to fraud or cyber crime, report 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.