On 11 December, representatives of Haemophilia Scotland, the Scottish Infected Blood Forum, the Haemophilia Society, Haemophilia NI, Haemophilia Wales, and Friends and Family of Haemophilia NI met on Wednesday with the Minister for the Cabinet Office, the Minister responsible for implementation of the findings of the Infected Blood Inquiry.
This meeting marked the first opportunity to meet directly with the Minister since the general election. We were one of 31 charities and campaign groups who had been invited to meet with the Minister split between 5 groupings. We had only 45 minutes for the meeting, which was clearly inadequate to get our concerns across.
At the start of the meeting the Minister said he was committed to engagement with the infected community, but this needed to be balance against the speed of delivery of compensation. A small number of infected have now progressed through the initial pilot group of 16 and will receive payments in the coming days and weeks. The IBCA has said it will now process a further 250 applications, but that leaves a long way to go, with many concerns unanswered.
In his introduction the Minister also:
- Advised that following intervention by Sir Brian Langstaff, the eligibility rules on compensation for siblings had been extended to adult siblings provided they met the other eligibility criteria – previously payment was to be made only to those under 18.
- Apologised for confusion and regretted inconsistent decision making by the support schemes over applications for interim compensation to estates. Written clarification of the requirements had yet to be published. So far £12.8M had been paid to estates as interim payments.
- Confirmed that the government were progressing with the second set of regulations covering the affected and those who wished to pursue the supplementary route.
- Said he would lay a written statement before Parliament next week together with a document setting out the Government’s response to the Inquiry as required by the Inquiry’s recommendations.
Each representative was then invited to speak for 4 minutes. The main issues raised on behalf of the respective organisations were:
- The inadequacy of the time allowed for groups to express their on-going concerns over aspects of the compensation scheme.
- The importance of the infected blood community being fully consulted on the content of the second set of regulations on the affected and supplementary route to avoid the sort of problems that are arising from the initial regulations.
- Information sought on the future plans to engage fully with the infected community at policy level.
- Importance of having funded legal support available to applicants throughout the compensation application process.
- Need for clarity on the evidence requirements which will be applied by the IBCA in their interpretation of regulations. Currently there is a lot of uncertainty over cases where information is not available e.g. date of infection. Suggested that the date of infection for haemophiliacs should be the date of first treatment with factor.
- Need to resolve the impact the decision taken to close the support schemes to new applicants from 31st March 2024 will have on widows of deceased infected after this date.
- The 4,631 people currently registered with a support scheme should receive compensation in 2025.
- The IBCA should aim to process applications at a quicker rate and thereby reduce their estimated operating costs of £26M per annum.
- Those with chronic Hepatitis B should have access to support schemes and interim compensation.
- The need for government to support the advocacy work of charities and campaign groups.
The Minister concluded the meeting with a number of comments which did not specifically address the issues raised by those present. He:
- Commented on IBCA as being an independent operational arms-length body, but decisions on the design and scope of the infected blood compensation scheme were matters for government.
- Accepted the need for those infected and affected to be involved in decision making, but did not seem to recognise that this was not happening at policy level saying it was important to balance engagement with speed of delivery, with a veiled suggestion that the IBI had taken too long to report. He offered no suggestion on what form this future engagement might take. He also emphasised the work on engagement undertaken by Sir Robert Francis over the election period and the changes to the scheme that had been made as a result.
- On the support for advocacy work for charities he said his official would write to the Department of Health and Social Care about this. This seems a strange response when it is a recommendation his office should be addressing under recommendation 10 of the IBI report.
- The meeting concluded with an invitation to those present to raise in writing any issue which they felt had not been addressed.
Overall an unsatisfactory meeting where there was no time to explore our concerns over the compensation scheme and it would appear an unwillingness to address them. This attitude is reflected in the responses we have received to written representations where the Minister tells us what the government is doing and does not address out concerns.