IBCA response to community group sessions on opening the service to people infected and never compensated

Our response to community group sessions on opening the service to people infected and never compensated

Please see the published summary of those sessions for more details, and we have summarised the main themes in the table below. The table below also sets out our response to the themes and suggestions we heard at these group discussions.

If you think we've missed any significant themes on opening the service to people infected and never compensated in these discussions, you can use our feedback form to let us know.

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Fairness and prioritisation

Suggestions and views raised at community group sessions

ICBA response

Strong concerns about ensuring the private beta (a small-scale test of the claims process with a small number of claims processed before it opens to everyone) doesn't favour those already engaged with IBCA. Emphasis on including diverse infections, ages and backgrounds in the first private beta claims. However, some felt it would be quicker to include those in private beta who had taken part in user research and earlier discussions (such as roundtable sessions) and that this would acknowledge the effort of participation and the contribution that it had on the development of the scheme.

Based on majority agreement in the sessions, we will prioritise cases in private beta according to the Inquiry's recommendations on prioritisation, i.e. severity of illness, people who are elderly and age. We recognise this will be disappointing for those who suggested we prioritise people who have taken part in previous engagement sessions with IBCA.

End of life and urgency

Suggestions and views raised at community group sessions	ICBA response
Agreement that end-of-life cases should be prioritised. Calls for broader definitions including severe mental health issues and recognition of other exceptional circumstances as well as medical urgency.	Based on majority agreement in the sessions, we will prioritise cases in private beta according to the Inquiry's recommendations on prioritisation, i.e. severity of illness, people who are elderly and age. We will develop an exceptions process for future groups of claims, to consider other exceptional circumstances.

Language and tone

Suggestions and views raised at community group sessions	ICBA response
Consistent feedback that words like "proof" are off-putting and create barriers. Preferences for supportive language like "indicative evidence" and supportive rather than suspicious framing.	We will include suggested language wherever possible, and welcome ongoing conversations on this.

Technology access and inclusion

Suggestions and views raised at community group sessions

ICBA response

Significant concerns about digital exclusion, particularly for older participants. One group queried why IBCA felt digital ID verification through One Login was the best approach. Strong emphasis that manual alternatives must not result in delays or disadvantage.

One Login will be the digital option for confirming identity, but non-digital routes will be available for those unable to use online verification. This will ensure no one is excluded or delayed because they cannot access technology. One Login is a robust online ID validation mechanism that lets us align to governments' best practice guidance. It gives us high confidence that people are who they say they are. One Login will streamline the identity validation process for those making a claim and is a quick and effective mechanism to implement. We can confirm that claims will not be prioritised based upon how people are able to verify their identity.

Trust and transparency

Suggestions and views raised at community group sessions	ICBA response
Requests for genuine engagement before decisions are finalised, with clear communication about processes. Assurance that feedback will meaningfully influence design.	We have committed to holding these types of sessions for each stage of service design. A summary of discussions, and our response to the main themes, will be published on our website for transparency. In addition, a feedback form will be provided for any member of the community to raise their views.

Recognition of historical trauma

Suggestions and views raised at community group sessions

ICBA response

The sessions highlighted frustration with past exclusions (particularly for the Hepatitis B community), and concerns about being "doubted again" after previous scheme rejections. Strong emphasis that technology should serve people rather than define access.

We recognise this trauma and frustration, and will design the service and support to minimise any further issues wherever possible. This includes assigning people a dedicated claims manager who will help them gather appropriate evidence, explain the process clearly and support them at each stage including ensuring they are aware of the financial and legal support available to them. However, the regulations require evidence, on the balance of probability, that a person was not only infected with Hepatitis B through NHS treatment with blood or blood products but that the infection also became chronic or that they passed away within 12 months of treatment.

Evidence

Suggestions and views raised at community group sessions

ICBA response

Participants also suggested allowing witness statements for those without documentation of an infection.

Evidence of infection through treatment with NHS blood or blood products will be required at an early stage, and we will listen to community views on how this could be managed. If someone who was infected and never compensated has little or no formal evidence, we can ask the Infected Blood Inquiry for access to written statements and exhibits to support claims where other evidence may not be available. We know many people won't have records from decades ago, and we'll take a fair and compassionate approach. Our aim is to recognise genuine claims, not penalise people for missing paperwork.

Technology and non-digital alternatives to One Login

Suggestions and views raised at community group sessions

ICBA response

Participants suggested allowing claim managers to verify identity directly or using trusted intermediaries like Citizens Advice. Passport-style countersigning. Strong emphasis that technology should serve people rather than define access.

We will consider these suggestions, as part of designing a non-digital alternative for those claiming. Our service is being designed in such a way that it is accessible to all and supports both online and offline service users. In order to make sure we have the appropriate validation in place we have also developed offline identity validation mechanisms for people who can't use digital services and we will explore these suggestions to ensure all the right support is in place.