Survey and feedback submitted to compensation authority

Written by Jessica Bomford, July 2, 2024

We have submitted a range of your views on the government’s proposed compensation scheme to the Infected Blood Compensation Authority (IBCA).

As part of IBCA’s consultation on the Infected Blood Compensation Scheme, we asked you, our members, for your opinions on the scheme in a survey which was sent out on 20 June. We also included the views you have shared with us in hundreds of phone calls and individual emails received since the scheme was announced on 21 May.

The survey was sent via email to all members, and was open to members and their families. We had 893 responses of which 38% are infected, 55% are affected and 6% are both infected and affected. The majority of respondents, 51%, have a bleeding disorder. Due to the short consultation period, we were unable to send out the survey by post.

You can read the results of the survey here. Please note that all comments in the survey were submitted to IBCA, but these will not be published as some contain confidential information which would identify the author.

The survey questions focussed on the main areas raised by our members in a webinar on 29 May and in emails and phone calls since the scheme was announced.

The main findings of the survey are:

  • 73% of respondents are not happy with the proposed compensation scheme, based on their current knowledge and expectations
  • 64% would prefer to have a combination of a lump sum payment and ongoing payments
  • If there was a guarantee that they would be no worse off under the new compensation scheme, 53% would not accept the ending of the current support schemes, 23% would accept it and 24% didn’t know
  • 24% would not accept the ending of support schemes regardless of the level of compensation, 31% didn’t know and 45% would accept the ending of the schemes in certain circumstances
  • 97% agreed that continued support schemes should be guaranteed for life
  • 59% felt the proposed hepatitis payments were not high enough to compensate for peoples’ loss and suffering
  • 53% wanted to see a hepatitis banding which includes impact on day-to-day life, such as the Special Category Mechanism used by the support schemes, 42% didn’t know, 4% said no
  • 81% said people with bleeding disorders should receive higher compensation to reflect complications from their pre-existing health condition, psychological impact, lack of consent and ignoring treatment guidelines
  • 65% said awarding compensation through estates would be a fair way of distributing compensation, 21% disagreed
  • 76% said there should be a free independent service for disputes over wills and inheritance
  • 77% said they felt confident managing compensation in a lump sum, 8% did not and 12% didn’t know
  • 77% of respondents do not currently use a financial adviser
  • 90% wanted to see free, independent financial advice available through the compensation scheme

The survey is included in our submission to IBCA which you can read here. It identifies the main issues of concern as the proposed ending of the annual support schemes, the banding and payment amounts for hepatitis C and the division of estates.

We understand that Sir Robert Francis, interim IBCA chair, is hoping to meet the new Paymaster General as soon as possible after the general election on 4 July to discuss the main points arising from the consultation and any changes resulting from it. Secondary legislation will be needed before the scheme will be operational. According to the deadlines established when IBCA was created, this secondary legislation will need to be in place by 24 August 2024 when the scheme must be up and running.

At present it is not possible to register for the proposed compensation scheme. Anyone already registered on a UK infected blood support scheme will not have to re-apply to IBCA, we understand. As soon as we have more information about how to register, we will publish it on our website.

We will update you when we receive further information from IBCA about the compensation scheme.