On 19 June we met with Sir Robert Francis, and several people working on the development of the IBCA including the interim CEO David Foley and Sir Johnathan Montgomery who chairs the expert group. The meeting was part of their engagement on the proposed infected blood compensation scheme.
A summary of the four meetings held has now been circulated to attendees and we have been given permission to share it below.
Sir Robert Francis was expected to have taken his recommendations to the new Government on Friday 5 July and we are awaiting further news about how this meeting went.
SIR ROBERT FRANCIS KC’S ENGAGEMENT PROGRAMME – INFECTED BLOOD COMPENSATION SCHEME: A SUMMARY
Sir Robert Francis KC, the interim Chair of the Infected Blood Compensation Authority, held four engagement sessions with representatives from prominent charities, organisations, and support groups within the infected blood community from across the United Kingdom. This was togather feedback from the community on the information published by the Government on 21 May, relating to the Infected Blood Compensation Authority (IBCA), and Infected Blood Compensation Scheme (IBCS), referred to throughout this document as ‘the Scheme’’. This was also attended by Professor Sir Jonathan Montgomery, Chair of the Infected Blood Expert Group, and David Foley, the interim Chief Executive Officer of the Infected Blood Compensation Authority, as well as Cabinet Office officials. This official readout provides an overview of the themes and issues that were raised across all four engagements. This readout is being shared with all attendees of the engagement meetings for transparency, and so that members of the community are able to see the discussions that were had. This document does not provide a policy response to points raised throughout the engagement programme.
Discussion points raised relating to Infected Blood Compensation Scheme and the Infected Blood Compensation Authority:
The future of the Infected Blood Support Schemes (IBSS)
- Attendees raised questions about the handling of future support scheme payments.
- Attendees noted the financial reliance beneficiaries have on regular IBSS payments. Attendees noted that any transition from support scheme payments to compensation must not result in a gap in payment to beneficiaries.
- Attendees set out points on the purpose of support payments and compensation with suggestions that these should remain distinct.
- Attendees suggested that support scheme payments had been expected to continue for life and not just healthy life expectancy.
- Cabinet Office officials noted that the support schemes are a devolved matter, and although the UK Government has received legislative consent from the devolved governments to enact a compensation scheme and treatment of ex gratia payments, the final decision on the continuation of support schemes lies with the devolved administrations.
- Cabinet Office officials noted that the Infected Blood Inquiry recommended that support scheme payments should be taken into account in assessing awards for future financial loss and care provision.
Severity Bandings and Awards
Severity bands
- Attendees raised questions on how the severity bands of the current IBSS would map across to the scheme, particularly in regards to chronic Hepatitis C infections.
- Attendees suggested that where a beneficiary has evidenced a greater negative impact of their infection within a IBSS, this should be recognised by the compensation scheme (e.g. special category mechanism for Hepatitis C stage 1 within EIBSS).
- Attendees supported the severity band proposal for HIV.
Core and supplementary routes
- Attendees raised concerns on difficulties for applicants to provide evidence to access the supplementary route if required.
- Attendees raised concerns on the introduction of caps to awards available via the supplementary route.
Injury award
- Attendees raised concerns about the lack of representation of psychological specialists in the Infected Blood Inquiry Response Expert Group.
- Attendees raised concerns that scheme did not recognise the full impact of psychological injury as a result of infected blood. It was suggested that the scheme should provide recognition to infected persons who died by suicide or made non-fatal suicides attempts.
- Attendees noted that many individuals have incurred their own costs due to requiring medication and psychological support over the years, and suggested that this should be compensated for in its own right.
- Attendees suggested that the adverse side effects of treatments, such as interferon and ribavirin, should be recognised by the scheme. Attendees suggested that where care costs increased as a result of negative side effects this should be compensated for under the scheme.
- Attendees raised concerns that the scheme proposal did not recognise the injury impact of being the subject of non-consensual research trials and studies
- Attendees noted that a psychological support service in England needs to be put in place as soon as possible.
Autonomy award
- Attendees raised concerns that the scheme did not recognise affected and infected partners who had pregnancies terminated as a result of links to infections.
Financial loss award
- Attendees raised concerns on the assumptions of the proposed core award that an infected person’s impact on financial loss reduced after the introduction of effective treatment for Hepatitis C and Hepatitis B. Attendees suggested that this assumption does not reflect the lived experience of the majority of individuals in relation to the time period of infected blood.
- Attendees raised concerns that the proposal for financial loss payments to bereaved affected individuals may not recognise the financial loss impact of bereaved parents of infected children or single parent families.
- Attendees noted potential difficulties in providing evidence of financial loss to access the supplementary route if required.
- Attendees suggested that redress for the financial losses incurred by campaigners should be recognised by the scheme.
- Attendees raised concerns that the financial loss of carers who had given up work to care for infected loved ones was not recognised by the scheme.
Care award
- Attendees noted that care bands and costs proposed by the scheme were broadly recognised by the community.
- Attendees noted that there was not always a linear experience of care requirements of an infected person.
- Attendees noted the importance of the supplemental route to offer applicants a mechanism to receive redress for higher care costs.
Impact on protected characteristics
- Attendees raised concerns that the current proposals do not fully appreciate protected characteristics, such as gender, age, someone’s status as a haemophiliac, and misdiagnosed individuals. Attendee noted factors have directly impacted people’s experiences in diagnosis and receiving various treatments and should be acknowledged.
Recognition of vCJD and inclusion in the compensation scheme
- Attendees raised concerns that consideration of risk to exposure to vCJD should be compensated for under the scheme.
Eligibility
- Attendees raised concerns on the conditions placed on sibling eligibility and in particular the criteria for siblings to have lived in the same household as an infected person for a period of at least 2 years after the onset of the infection.
Estates
- Attendees raised concerns on the administrative process for applicants to lead claims on behalf of deceased infected persons estate. Particular concerns included issues with costs of obtaining a grant of probate/confirmation/letter of administration and mediation support.
Tax and benefit impacts
- Attendees noted the importance of ensuring cross Government understanding that any payments made to those eligible under the scheme will be exempt from income tax, capital gains tax and inheritance tax and disregarded from means tested benefit assessments. This was made in particular regard to the Department Work and Pensions and benefit assessments.
- Attendees noted the importance of ensuring the scheme supported victims of infected blood to apply for compensation, particularly in regards to legal support services and collation of supporting evidence.
- Attendees suggested applicants should receive financial advice to support management of compensation monies including counter fraud advice.