Appendix 1: Additional information from the Cabinet Office
Infected Blood Compensation Scheme Regulations 2024 (SI 2024/872)
Q1: How have the circumstances in which an indirectly infected person can be eligible been decided? For example, sexual transmission is limited to those in a long-term relationship–why is this, as the indirectly affected person suffers in exactly the same way and for the same underlying reason regardless of the length of the relationship. And do definitional issues arise, for example, how is “long-term” defined?
A1: The basis for eligibility for the indirectly infected was how this is handled by the existing Infected Blood Support Schemes. Regarding direct vertical transmission from mother to child, this definition is used to cover the three routes that a mother may transfer an infection to a baby: breastfeeding, transmission during childbirth, and transmission in utero.
Regarding accidental needlestick injury, this is intended to cover situations where someone (perhaps a close family member) has accidentally pricked their skin with a hypodermic needle that has previously been used on someone who was directly infected. For example, a mother who was using the needle on a small child.
Regarding transmission via close proximity, this was drafted with Hepatitis B - which is much more virulent than either Hepatitis C or HIV - in mind. It is possible to transfer Hepatitis B through close contact and sharing a living space (for example, through bodily fluids on surfaces). We felt it was important to cover this eventuality, particularly given that other routes may not be covered.
Regarding sexual transmission, the definition for a “long term relationship” is provided at regulation 7(10). In summary, it covers individuals who are married, in a civil partnership, or cohabiting and living as though they were either married or civil partners. We are aware that this will not cover all avenues of sexual transmission, such as short term relationships or single instance sexual encounters and consideration was given as to whether these could be adequately covered. We opted for a narrower definition on evidentiary grounds. It was not clear to officials how a person who alleges that they received an infection from, for example, a one-off sexual encounter with a stranger would evidence that. Furthermore, having such instances in scope was deemed to materially increase the risk of fraud.
Q2: The payment tariffs for Hepatitis B and C are consistently lower than for HIV–can you please explain the rationale for that?
A2: There are 4 severity bandings for people who are infected with Hepatitis C. The Severity Bands have been designed in line with clinical diagnostic markers (i.e. recognised health conditions, for example, liver damage) and have been informed by the work of the Expert Group.
The reason for using a single severity band is that HIV is a lifelong infection. The vast majority of people infected with HIV through blood products have experienced progression to advanced symptomatic HIV disease including AIDS conditions and have died as a consequence of their infection. Those who have survived will continue to be severely impacted by their infection. It was the view of the Expert Group that it would be disproportionately complex and onerous to disaggregate the category into different experiences.
This contrasts with Hepatitis where there is a wider range of experiences, including both acute infections with limited long-term impacts and very serious and ultimately fatal infections. For example, according to WHO data around 30% of individuals with a Hepatitis C infection clear the virus within six months without treatment. We did not consider it acceptable to compensate such an individual in the same manner as someone with a chronic infection who carried the virus for potentially decades.
Q3: In the care award, amounts are reduced by 25% to reflect that care may not have been paid for. What about in circumstances where care was paid for?
A3: This will be covered in the supplementary route, which will be established through the second set of regulations. If individuals can evidence higher care costs then these will be compensated for, though policy is still under development in this area.
Q4: The EM states that the ‘IBSS route’ will be available to those who are registered with the IBSS on or before 31 March 2025. Can eligible persons apply to the IBSS now ahead of that deadline?
A4: Yes, the Infected Blood Support Schemes (IBSS) remain open for people who are eligible to register. The eligibility of the IBSS is not the same as the Infected Blood Compensation Scheme - which is based on the recommendations of the Infected Blood Inquiry.
Q5: Why is it necessary to have different routes for those registered with IBSS and those not (Explanatory Memorandum (EM) paras 5.8 and 5.9)? And in practice what is the difference in payouts?
A5: The ‘IBSS-route’ was developed following the recommendations of Sir Robert Francis KC, who undertook engagement with key representatives of the infected blood community. A key concern raised by members of the infected blood community was around the continuation of the IBSS.
Following Sir Robert’s recommendations, the Government has agreed that support scheme payments will continue for life, for those registered on a support scheme on or before 31 March 2025, as part of the compensation package.
Q6: Why are payments under some existing schemes deducted (EM para 5.8.6) and some not (EM para 5.26)?
A6: Support scheme payments made before 1 April 2025 are always considered ex gratia, regardless of what scheme they were made under. Interim payments are deducted because they were intended as interim payments of compensation whilst the final scheme was brought into law.
Q7: If payments under IBSS are ignored, does this mean that two people in exactly the same circumstances could end up with different total payments depending on whether they did or did not previously join IBSS? If so, why is that fair?
A7: As the Government set out, IBSS payments before 1 April 2025 are not counted towards compensation, these payments were historically made by the government on an ex gratia basis and the Government has decided that it is right that this ex-gratia basis should be honoured until the end of this financial year. During the engagement exercise the infected blood community was very clear that they do not consider support scheme payments as compensation and that deducting them from awards would be unjust. It is inaccurate to suggest that someone who received payments made on an ex-gratia basis is receiving more compensation than someone who didn’t. Support scheme payments received after 31st March 2025, will be taken into account when the Infected Blood Compensation Authority assesses an applicant’s future financial loss and care awards. This assessment will not reduce the value of support payments which will continue to be paid for life.
Q8: Are there any respects in which the approach differs from that recommended by the Inquiry/Expert Group? If so, please explain what these are and why a different approach has been taken.
A8: The Infected Blood Inquiry recommendations have formed the basis of the Infected Blood Compensation Scheme. We have worked hard to accept as many of Sir Brian Langstaff’s recommendations as fully as we can and to work with the spirit of the recommendations where full acceptance is not possible. We have deviated in some instances from the recommendations in the second interim report: for example, in order to prioritise delivering for the infected blood community as efficiently as possible and to ensure proper accountability of Government to Parliament. The Infected Blood Inquiry Response Expert Group was appointed in January 2024 to provide technical advice to the Cabinet Office on responding to the Infected Blood Inquiry’s recommendations on compensation. Although the Group did not provide formal recommendations, their work was central to informing the development of the Infected Blood Compensation Scheme. The Government’s proposed Scheme has been improved following an engagement exercise carried out by Sir Robert Francis KC, Interim Chair of the Infected Blood Compensation Authority, to take on board feedback from people who will access the Scheme. The Government accepted 69 of the 74 recommendations made by Sir Robert.
Q9: There are further recommendations in the Inquiry report–what is the Government’s timetable to implement them?
A9: The Infected Blood Inquiry recommended that within 12 months of the publication of its Report (20 May 2024) the Government should consider and either commit to implementing the recommendations, or give sufficient reason why it is not considered appropriate to implement any one or more of them. During that period, and before the end of the year, the Government should report back to Parliament as to the progress made on considering and implementing the recommendations. The Government has committed to reporting back to Parliament on progress by the end of the year.
29 August 2024