Meeting with Infected Blood Compensation Authority

Written by Jessica Bomford, June 18, 2024

The Haemophilia Society and other support groups have had a meeting with representatives of the Infected Blood Compensation Authority (IBCA) about the government’s proposed compensation scheme.

Meeting details

We were invited to an online meeting on 18 June along with representatives from Haemophilia Scotland, Haemophilia Wales, Haemophilia NI, the Scottish Infected Blood Forum and Friends and Family of Haemophilia NI. The meeting lasted for two hours and was attended by Sir Robert Francis, interim Chair of IBCA, David Foley, interim Chief Executive, and Professor Sir Jonathan Montgomery who led the government’s expert group on compensation. There were also civil servants from the Cabinet Office present who will deal with the logistics and content of the compensation scheme. Another four meetings with campaign groups either have taken place or will take place this week.

IBCA will publish a summary of the main points raised when all meetings have taken place at the end of the week. While we’ve been asked not to share all the details of what was said in the meeting, we want to let you know the main points that were raised by our Chair, Clive Smith and our Head of Policy and Campaigns, Debra Morgan, who were present at the meeting.

Confusion over compensation

The meeting was to discuss feedback on the government’s compensation scheme which was announced on 21 May 2024. Since then, we have received more than 450 phone calls and 300 emails from members as well as the wider haemophilia community looking for information and clarification about the proposed compensation process. Some of the points raised in these communications were passed on in the meeting. We will be incorporating more detailed feedback into our written submission to IBCA.

Support schemes should continue

Clive told the meeting that the Haemophilia Society had been overwhelmed by enquiries and that uncertainty about the scheme was causing great anxiety to our community. He said there was significant demand for the continuation of the regular support payments which, under the compensation scheme proposals, would end in March 2025.

Clive also said that as infected blood support schemes are delivered separately through the devolved nations, there was a real possibility that they might continue in Scotland, Northern Ireland and Wales and stop in England, creating differences across the UK. He reminded the meeting that Sir Brian Langstaff, Chair of the Infected Blood Inquiry, had called for equity across the UK’s support schemes.

Debra added that compensation should not be support payments paid upfront. She said our view is that compensation for what has happened in the past. Support payments should continue to cover future care needs and future financial loss.

Hepatitis banding should be revisited

Clive also raised the issue of the banding levels of hepatitis C, which he said needed to be overhauled to reflect more fairly peoples’ experiences. Clive said the banding should also reflect the additional impact of living with a chronic condition, such as haemophilia, which compounded adverse treatment effects.

Concern over division of estates

Clive told Sir Robert that there was concern about how estates would be divided. There were a number of examples where the lump sum could potentially go to someone not infected or in any way connected to someone infected. Lack of information about how lump sums might be distributed was causing significant worry and anxiety to our members, he said.

Others representatives raised issues around tax and inheritance law, supplementary routes for additional financial loss, lack of compensation for vCJD, and whether ‘adult’ children of the infected were included in the scheme.

At the meeting there was a degree of frustration that there were no specific answers given to queries put forward, although IBCA representatives did attempt to explain various issues, they did not give the clarity we were seeking.

Contact IBCA

We learnt that 7,000 people have registered an interest in ‘shaping’ IBCA. Sir Robert encouraged everyone to submit their views on the compensation scheme as soon as possible using this email: [email protected].

Survey for THS members

We will be sharing a survey via email with our members later this week. The results of this, plus a more detailed written submission, will be given to IBCA by the end of June. We understand that IBCA wants to put any changes to ministers as soon as possible after the general election result, which takes place on 4 July.