Survey results: June 2025

Communications about the compensation scheme

Official channels are viewed as key

The IBCA community views official channels, such as the IBCA website, as a reliable and trusted source of information, with over three quarters (76%) typically visiting the website for updates, and over half (59%) viewing it as a trustworthy source of accurate information.

Have you seen, heard or read any information about the Infected Blood Compensation Scheme recently?

Yes	89%
No	10%
Prefer not to say	2%

Any information	96%
Via email (e.g. from the Infected Blood Compensation Authority)	77%
Social media (for example, Facebook, Twitter/X, Instagram, TikTok)	38%
Online forums or communities	35%

*The information in the table is limited to the four top sources of information only.

The most common offline source of information was TV programmes or news (28%).

Can you describe the information you saw, heard or read? What did it look/sound like? What did it show or say?

Compensation Scheme (NET)	52%
Timetable / Delays	40%
Compensation Scheme in general	7%
Statistics (number of claims processed / amount paid)	6%
Claim process	5%
Efficiency	4%
Evading responsibility	4%
Eligibility	3%
Staff	3%
Injustice	2%

Comments from respondents included:

• "I am registered to receive emails from IBCA - so I see everything they send out. I am in several Facebook communities which provide information daily. I also receive updates from the Inquiry team, including recently the latest updated witness statements and an invitation to tell Sir Brian Langstaff and his team how I view the IBCA and the compensation scheme."
• "I've seen a lot of information, its good to have the calculator but that aside most of the information is generic and doesn't seem to address the issues that are of real concern."
• "Clear information but it is very hard to accept time it is taking to make payments quickly to those eligible"
• "IBCA update emails. The minutes of the delegated legislation reviews in the House of Lords and House of Commons. Facebook groups for infected and affected people"

What, if anything, have you done / intend to do as a result of seeing, hearing or reading any information about the Infected Blood Compensation Scheme?

	Action taken	Intended action
Sign(ed) up for updates from IBCA	61%	27%
Visit(ed) the IBCA website	56%	36%
Discuss(ed) the scheme with family or friends	55%	36%
Look(ed) up more information about the scheme	40%	26%
Share(d) information about the scheme with family or friends	35%	27%
Search(ed) on the internet for more information about the scheme	34%	23%
Visited gov.uk	33%	Not asked
Emailed IBCA	31%	Not asked
Call(ed) IBCA by telephone	25%	17%
Contact(ed) a support organisation	20%	17%
Seek(sought) legal advise	17%	25%
Donate(d) to a charity / support organisation	3%	3%

As a result of seeing, hearing or reading any information about the Infected Blood Compensation Scheme, most signed up for updates from IBCA (61%) and visited the IBCA website (56%). This is reflective of the general trend of IBCA respondents gravitating towards official IBCA communication sources.

Where do you typically go for updates or information on issues related to the Infected Blood Compensation Scheme?

The Infected Blood Compensation Authority website	76%
Online forums or communities, including charity websites	33%
Social media (for example Facebook, Twitter/X, Instagram, TikTok)	31%
Family or friends	14%
Another government website	13%
Newspapers and magazines (including websites)	10%
NHS websites	9%
Emails / updates (from IBCA)	4%
My GP or another healthcare professional	2%
Charities (for example Haemophilia Society / Haemophilia Wales / Hep C Trust)	2%
None of the above	3%

Which sources do you trust most for accurate information on the Infected Blood Compensation Scheme?

The Infected Blood Compensation Authority website	59%
Online forums or communities	25%
Another government website, such as gov.uk	19%
Social media	14%
NHS websites	7%
News websites	6%
Newspapers and magazines	4%
Legal representatives / solicitors	2%
Charities	2%
My GP / Haematology Consultant	2%
None of the above	10%
Don't know / Prefer not to say	5%

What information would you find useful to receive about the Infected Blood Compensation Scheme?

Compensation timelines	47%
Service (assistance / procedures)	25%
Why slow speed of payments	19%
Transparency	8%
Tangible actions IBCA are taking	8%

Comments from respondents included:

• "When I will receive my compensation"
• "When it will all be finally over"
• "A clear breakdown of when we can claim and for what. I'm still not clear if I can claim for [redacted] as a bereaved partner or if that falls under 'estate claims' or both. And with all the emails and calls for signing up before the deadline, it's been totally unclear who should be signing up…? Clarity and speed are what we need."
• "[…] No one has contacted my partner as yet as the infected person nor myself as to the affected person. It is very confusing and breeds mistrust."
• "That they are pulling their fingers out and compensating everyone starting with the infected. There seems no urgency even though there are deaths every week."
• "The actual commencement date for paying estates of loved ones who were infected in the 70's and 80's, bore the worst of the stigma in early 80's, and died in 90's. And their families suffered with them and are STILL suffering. 50 years of suffering is too much to bear now."
• "A realistic timeline of expansion. Potential date that I will be notified to start my claim"
• "An invitation to claim before I die"
• "To be clear & honest & stop pretending they are working for the infected community and own up to trying to save money for government."
• "Transparency. The truth. Independent information from government."
• "All of it in plain English"