IBCA response to community group sessions on building a claim service for affected people

Our response to community group sessions on opening the service to affected people.

Please see the published summary of those sessions for more details. 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, you can use our feedback form to let us know.

Fairness and prioritisation

Suggestions and views raised at community group sessions	IBCA response
People told us they want the affected claims process to be fair, consistent and clear.	We are using user research and feedback from these sessions to help design the claims process for affected people.
There was a strong message that families want emotional strain and loss of opportunity to be properly recognised.	We recognise the immense trauma experienced by many people who will be claiming, and train all our colleagues in taking a trauma-informed approach.
Participants asked for clarity on what evidence they will need, how their lived experience will be included, and how much time they will have to gather supporting documents.	We are designing clear, consistent guidance. The private beta will help us learn what evidence is most helpful. We will update and publish guidance as we learn more.
Groups raised worries about inconsistent treatment between cases that look similar. There were concerns about people having to repeatedly re-tell painful experiences and about the impact this may have on mental health. Some people were anxious that the process could disadvantage those who are less confident, less literate or have limited access to support. Some groups were worried about the potential length and any complexity of the process.	Our training is in depth and covers all aspects of people making a claim. We can help find evidence required to process a claim and our claim managers will fully support each person making a claim. We are also building support for people who may struggle with confidence, literacy or digital access.

Support when making an affected claim

Suggestions and views raised at community group sessions	IBCA response
Attendees asked for a single point of contact outlining that it would help to speak with someone who understands the community and the history.	We agree that a single point of contact will help improve trust and support. A named claim manager is provided for each person claiming, and can support each person to gather evidence from other organisations if needed.
Attendees said they want everyone to have the same access to support, not only those already connected with groups. People said people should have access to advocacy support at the time they are gathering evidence.	Independent, free legal support is also offered to those eligible to make a claim, to provide additional support.
Some said practical help (for example someone to talk them through timelines or help organise documents) would reduce stress.	We also make sure that trained staff supporting people understand the community's history and context. The indepth training programme provided to all claim managers will help people navigate the compensation process.

How we design the service

Suggestions and views raised at community group sessions	IBCA response
A number of attendees said that confidentiality, sensitivity and trauma awareness are essential and that we should minimise the burden on people by using existing data wherever possible.	We are designing the claims service with trauma awareness, confidentiality and sensitivity at its core. We are actively looking for ways to reduce burdens, including using existing records where appropriate.
Attendees also told us to think about people who may not come forward or who may not realise they are eligible.	We are planning targeted outreach to ensure no one misses the opportunity to make a claim.
There was an ask for plain-English materials and well-signposted guidance.	We will continue to publish clear, accessible materials written in plain English.
Some emphasised the need for culturally competent staff and inclusive processes.	We are investing in training to ensure staff are equipped to engage with everyone respectfully and inclusively.

ID verification and digital access

Suggestions and views raised at community group sessions	IBCA response
Some attendees said some may struggle with digital systems and emphasised the need for alternatives to online forms.	We are designing the claim service to be as simple as possible.
People said the service must be easy to navigate even for those with limited IT skills.	We will provide alternative routes to make a claim, for those who can’t access digital options, making sure that people can submit claims offline with support.
Suggestions for countersigning, trusted intermediaries, CAB verification and claim manager ID verification. Attendees strongly emphasised that manual options must not delay claims.	One Login, the single sign-on system that allows members of the public to access multiple government services with one set of credentials, will be available for digital users, and non-digital alternatives will be provided.

Timelines and communication

Suggestions and views raised at community group sessions	IBCA response
Some attendees asked for early clarity on when affected claims will open, and there was concern about uncertainty causing stress.	We have now opened the service to the first claims for those acting on behalf of a deceased infected person, and for those who are affected. We will start by bringing in around 15 people for each group to begin with.
Attendees want early, realistic timelines and kept up to date, even when there is no major change. There was also a sense that IBCA should clearly explain why certain decisions take time.	We are starting with small numbers as we have done when opening the claim service to all other groups. This approach means we can learn as we go, then open to more people as the service is built around your needs.
Repeated requests not to say “working at pace” and the need for plain English updates on issues, delays, risks, pitfalls.	We will continue to publish regular updates on IBCA progress via our Community Updates, and will continue to publish fortnightly figures on numbers of claims.
Simple cases should be cleared quickly to avoid unnecessary delay especially for claims with minimal documentation requirements once eligibility is confirmed.

Managing family relationships

Suggestions and views raised at community group sessions	IBCA response
Ongoing concern from some over providing evidence of common-law partnerships especially where families are estranged families.	We recognise this is a complex area, and are working with the probate service and other organisations to understand issues that may arise.
Requests for clear examples of “acceptable proof” (birth certificates, shared addresses, DWP carer records etc).	We will publish more details on the type of evidence that is required as we learn more through the first claims that are processed for each group.
Strong emphasis on avoiding sending compensation to “the wrong group” or individuals, especially where there are complex or blended families. There was a request from some for early mapping for families as quickly as possible to avoid disputes and delays.

Managing emotional distress

Suggestions and views raised at community group sessions	IBCA response
Comments from some attendees that they fear they “may not make it to the end of the process.”	We are prioritising claims for those who are sadly nearing the end of their lives, and elderly people, in line with the Infected Blood Inquiry’s recommendations.
People need acknowledgment of psychological impact in all communications from IBCA.	We recognise the level of distress and will continue trauma-informed training for all customer-facing staff.

Consultation stage fatigue

Suggestions and views raised at community group sessions	IBCA response
Participants thanked IBCA for listening but expressed strong desire to move from consultation to delivery.	We are committed to bringing in claims as quickly as we can, and have so far made offers of compensation totalling more than £2 billion.
Community frustration that processes have been ongoing for decades.	We want to ensure that each and every person can start their claim as soon as possible. We are now beginning to bring in the first claims for those infected and never compensated, those representing a deceased infected person and affected people.

End of life prioritisation

Suggestions and views raised at community group sessions	IBCA response
A strong consensus that end-of-life cases must be prioritised and that age and vulnerability must be factored in. Other attendees commented that ‘estates’ claims and simple cases should be progressed first and that affected people who were representing those who are deceased and were infected must not be delayed. Need clarity on approximate timing or queue position for financial planning.	We will prioritise cases according to the Inquiry’s recommendations on prioritisation.

Secure online portal need

Suggestions and views raised at community group sessions	IBCA response
A number of attendees outlined a strong preference for a portal allowing easy uploads, tracking, and updates. There was a sense that this would provide a sense of control, especially for those nearing the end of life and allow people to “push their case forward.”	We are designing further online services, and will continue to update on progress.

Over-reliance on claim reference numbers

Suggestions and views raised at community group sessions	IBCA response
Some people criticised the use of claim reference numbers as “petty” and too rigid as a way of proving a link to a wider claim. There were recommendations that IBCA should use documents from other schemes, past applications, medical records, or inquiry documents.	We will not rely solely on claim reference numbers and can consider other data and documents where appropriate.

Community groups

Suggestions and views raised at community group sessions	IBCA response
Community organisations can help explain processes now and before claims open. Desire for partnership working to offer support and signposting.	We continue to work with community groups to ensure accurate, consistent messaging and support, especially for vulnerable people. We are very grateful for this ongoing support.

Use of public and government records

Suggestions and views raised at community group sessions	IBCA response
Strong recommendation that IBCA proactively access probate records, DWP data, existing therapy-grant lists and treatment centre records.	We will use existing public records wherever possible and are exploring direct access to probate and related data. IBCA claim managers can support each person to gather evidence from other organisations if needed. This will reduce the burden on people and support claims to progress.

Clarity on documentation requirements

Suggestions and views raised at community group sessions	IBCA response
Attendees outlined strong repeated calls for immediate, unambiguous and early guidance on documentation with requests for a checklist or “gold, silver or bronze tiers.”	We will publish clear, accessible documentation guidance and share examples of acceptable evidence as we learn more from private betas and bring in the first claims from each group.
There was an emphasis that uncertainty increases anxiety for people involved in the process with a desire for early clarity: “Exactly what is needed; no reason why this can’t be done now.”	We agree that clarity reduces anxiety, and we will continue to issue updates regularly.

Linking infected and affected claims early

Suggestions and views raised at community group sessions	IBCA response
Concern that affected claims will be forced to wait until the infected claim is ready and a strong push for linking at proof of eligibility and allowing both journeys to begin in parallel.	We will establish required links between infected and affected claims as early as possible.
Suggestion that affected claims “need to be seen in parallel… streamlined.”	Where possible, the Inquiry recommends that we progress all types of claims in parallel. An affected claim cannot be completed until the infected claim has been processed, because this information is needed to calculate compensation.

Specialist support, helplines and help for elderly people

Suggestions and views raised at community group sessions	IBCA response
A number of attendees made calls for dedicated specialist support teams (Hep C, Hep B, estates specialists).	We are developing guidance for all types of claims as we learn from the first claims we process.
Requests for a telephone helpline, especially for elderly or vulnerable people.	Our helpline regularly takes calls from those who need more support. Anyone can confidentially raise these needs with their claim manager or by calling the helpline on 0141 726 2397.

Mental health and emotional impact

Suggestions and views raised at community group sessions	IBCA response
Attendees raised concerns that documentation stress is causing emotional strain.	We recognise the emotional impact that claiming can bring.
People reviewing medical records described the experience as “abuse.”	Claim managers are trained to work sensitively and keep information requests to a minimum wherever possible, only requesting essential information.