Infected Blood Inquiry

There be forms (devised by IBCA) for people to register and apply for a core award and the supplementary awards with/without the necessary evidence and with/without calculation of compensation, and as an intermediate step that IBCA provide the option to move straight to the declaration stage for individuals providing all the necessary information.

IBCA include a prominent reference to the availability of legal support paid by IBCA on all registration and application forms and in public information about the compensation scheme and that the Solicitors Regulation Authority remind solicitors of their obligations.

When IBCA opens up the service beyond people infected and registered with the support schemes, IBCA: (i) update the sequencing to three cohorts, people infected and never compensated, the deceased infected, and people affected and (ii) adopt a scheme of prioritisation within each cohort which can be objectively applied and is easily understandable and (iii) progress the cohorts in parallel not sequentially.

IBCA should publish: guidance, advice or instructions to claim managers; work undertaken by IBCA with the Cabinet Office's policy team to ensure that IBCA understands "in depth the policy intent behind each regulation"; the papers that have been produced by IBCA addressing specific issues within the Regulations – such as the "dating principles paper", the "paper on HIV infection dating" and the "Hepatitis B (post-1972) paper" – and any future similar papers; IBCA's approach to the Hepatitis severity bandings in Schedule 1 to the 2025 Regulations; minutes of the meetings of IBCA's Board (except where publicity would be prejudicial to the public interest by reason of the confidential nature of the business to be transacted, or for other special reasons stated by resolution of the Board and arising from the nature of that business or of the proceedings).

In respect of any case in which the advice of a clinical assessor has been given, in relation to the person concerned (and no more widely except with the consent of that person): that person should be told the factual basis on which that advice has been given; and the reasons for that advice. Such information must be shared with the individual in writing in sufficient detail so that they, and where represented, their solicitor, can understand and where appropriate challenge the correctness of that advice.

A formal role be given within IBCA for an advisory body consisting of people infected and affected, covering a range of experience broadly representative of those groups, and (if those groups so wish) including clinicians covering the major relevant disciplines of hepatitis and liver disease, HIV, transfusion, haemophilia, psychosocial aspects and palliative care. The advisory body should choose its chair, and the chair should be formally invited to each and every meeting of the Board of IBCA, and be given observer status.

To build confidence that IBCA is actively listening to people infected and affected, IBCA adopt more of a structured response to contributions from people infected and affected. Consideration should be given, as a minimum, to making a contemporaneous record of IBCA's understanding of the matters that had been raised in meetings with people infected and affected and setting out IBCA's response to each point.

A permanent memorial be established in the UK and consideration be given to memorials in each of Northern Ireland, Wales and Scotland. The nature of the memorial(s), their design and location should be determined by a memorial committee consisting of people infected and affected and representatives of the governments. It should be funded by the UK government.

The General Medical Council, and NHS Education for Scotland, Health Education and Improvement Wales, Northern Ireland Medical and Dental Training Agency and NHS England, should take steps to ensure that those “lessons to be learned” which relate to clinical practice should be incorporated in every doctor’s training.

Duty of candour:

The operation of the duties of candour in healthcare in Scotland and in Wales should be reviewed, as it is being in England, to assess how effective its operation has been in practice. Since the duty was introduced in 2023 in Wales, the review there need not be immediate, but should be no later than the end of 2026.

Regulation:

That external regulation of safety in healthcare be simplified. As a first step towards this, there should be a UK wide review by the four health departments of the systems of external regulation, with the aim of addressing all the points made earlier in this Report and in other reports since 2000.

Regulation:

That the national healthcare administrations in England, Northern Ireland, Scotland and Wales explore, and if appropriate, support the development and implementation of safety management systems (“SMS”s) through SMS coordination groups (as recommended by the HSSIB), and do so as a matter of priority.

Patient Records:

Before the end of 2027 there should be a formal audit, publicly reported, of the extent of success of digitisation of patient records in each of the four health jurisdictions of the UK, measuring at least the levels of patient access to their personal records, their ability to identify and correct apparent errors in them, their interoperability, and the confidence of health professionals in the detail, accuracy and timeliness of any record they enter, and that little material which should be recorded has been omitted. Next steps should be identified.

Coordination of patient records with devolved governments:

Consideration should be given by the national healthcare administrations in England, Scotland, Wales and Northern Ireland, to further coordination of their approaches particularly to ensure that patterns of harm, or trends, are identified and any response which for the sake of patient safety would be better coordinated than left to each individual administration can collaboratively be agreed and implemented.

All patients who have contracted hepatitis via a blood transfusion or blood products should receive the following care:

Those who have been diagnosed with cirrhosis at any point should receive lifetime monitoring by way of six-monthly fibroscans and annual clinical review, either nurse-led, consultant-led or, where appropriate, by a GP with a specialist interest in hepatitis

All patients who have contracted hepatitis via a blood transfusion or blood products should receive the following care:

Those bodies responsible for commissioning hepatology services in each of the home nations should publish the steps they have taken to satisfy themselves that the services they are commissioning meet the particular needs of the group of people harmed by NHS treatment

Review of progress towards the Transfusion 2024 recommendations:

Progress in implementation of the Transfusion 2024 recommendations be reviewed, and next steps be determined and promulgated; and that in Scotland the 5 year plan is reviewed in or before 2027 with a view to determining next steps.

Establishing the outcome of every transfusion:

That a framework be established for recording outcomes for recipients of blood components. That those records be used by NHS bodies to improve transfusion practice (including by providing such information to haemovigilance bodies). Success in achieving this will be measured by the extent to which the SHOT reports for the previous three years show a progressive reduction in incidents of incorrect blood component transfusions measured as a proportion of the number of transfusions given.

The necessary administrative and clinical resources should be provided by hospital trusts and boards, integrated care boards, and service commissioners to facilitate multi-disciplinary regional networks to discuss policy and practice in haemophilia and other inherited bleeding disorders care, provided they involve patients in their discussions.

A clinical audit should as a matter of routine include measures of patient satisfaction or concern, and these should be reported to the board of the body concerned. Success in this will be measured by comparing the measure of satisfaction from one year to the next, such that the reports to the board concerned demonstrate a trend of improvement by comparing this year’s outcomes with the similar outcomes from at least the two previous years.

That the following charities receive funding specifically for patient advocacy: the UK Haemophilia Society; the Hepatitis C Trust; Haemophilia Scotland; the Scottish Infected Blood Forum; Haemophilia Wales; Haemophilia Northern Ireland; and the UK Thalassaemia Society.

That favourable consideration be given to other charities and organisations supporting people infected and affected that were granted core participant status (as listed on the Inquiry website) to continue to provide support for at least the next 18 months. Further support should be reviewed at that stage with a view to it continuing as appropriate.

Within the next 12 months, the Government should consider and either commit to implementing the recommendations which I make, or give sufficient reason, in sufficient detail for others to understand, why it is not considered appropriate to implement any one or more of them.

During that period, and before the end of this year – the Government should report back to Parliament as to the progress made on considering and implementing the recommendations.

This timetable should not interfere with earlier consideration and response to the Recommendations of the Second Interim Report of the Inquiry.

The Government and IBCA establish a mechanism by which individuals or organisations may raise concerns which arise about any aspect of the scheme which from time to time is troubling them. The mechanism is intended to help continuous improvement of, and/or aid understanding of, any aspect of the scheme. It should involve identifying a person or body to whom any such concern should be expressed, whose role it is to consider the concern, log it, and ensure that a person of appropriate seniority either responds to it in writing, or ensure that it is placed on the agenda for the next meeting of the advisory body or IBCA's Board or is considered by the Cabinet Office and Minister as appropriate.

For the calculation of Financial Loss awards for Hepatitis B, people born after 1953 should be treated like those born in or before 1953 on provision of evidence that their health did not improve or that it remained difficult to find work from 2009. For the calculation of Financial Loss awards for Hepatitis C, people born after 1961 should be treated like those born in or before 1961 on provision of evidence that their health did not improve or that it remained difficult to find work from 2017.

Where the level of severity of a person's infection at Level 3 or more has been established to IBCA's satisfaction in relation to a given year, but it is not known when it reached Level 3 or more, the legislative provisions should apply to deem the level of severity in the years which preceded that given year.

Regulation 14(2)(c) be amended to remove the requirement for evidence of the date of diagnosis of Hepatitis B or C. An appropriate redraft to achieve this would be: "where the diagnosis mentioned in sub-paragraph (a) is one of HIV, the date on which it was given."

The IBSS cut-off date of 31 March 2025 be reviewed, that the scheme should as soon as possible reinstate support payments to partners bereaved after 31 March 2025 until such time as they receive compensation and that they should have a continuation of those payments as an option in their compensation package.

An interim payment, of no less than £100,000, should be paid to all those infected and all bereaved partners currently registered with any of the four UK infected blood support schemes, as well as those registering ahead of the inception of a future compensation scheme.

I recommend that the scheme should offer redress to those infected with HCV and/or HIV, and/or HBV (limited to chronic HBV unless the infection has resulted in a fatality in the acute period), and to defined categories of persons indirectly affected by such infections.

I recommend that the conditions of eligibility for admission of relevant infected persons to the scheme should be that: a) they have been diagnosed as being infected with one or more of HCV (including natural clearers who have suffered loss), HIV, or HBV (limited to chronic cases of HBV unless the infection has resulted in a fatality in the acute period); b) they received a transfusion of blood or components of blood, blood products or transfer of tissue capable of transmitting one or more of the relevant diseases; and c) their infection was not unlikely to have been caused by administration of the relevant treatment, regard being had as to the available evidence as to the measures in place at the time to reduce the possibility of infection, including but not limited to the date of relevant effective screening tests or effective viral inactivation treatments; or d)(i) it was not unlikely to have been caused by transmission to them by a person who fulfils conditions (a) to (c) above, or (ii) by transmission to them by a person who fulfils condition (d)(i), such as a child or children infected by their mother who had previously been infected by her partner, who in turn had been infected as in (a)-(c).

As above, save that (a) the last bullet point should read: "eligibility is accepted if the information available points towards eligibility and the opposite cannot be shown to be more likely" and (b) eligibility should be automatic for individuals already accepted under an existing support scheme.

I recommend that the following relevant affected persons should be admitted to the scheme: a) spouses, civil partners and long term cohabitees (for at least one year in the case of the latter) of living or deceased eligible infected persons; b) children of an eligible living or deceased infected person; c) parents of an eligible living or deceased infected person; d) siblings of an eligible living or deceased infected person; e) providers of care to an eligible living or deceased infected person, as a result of the infection; and f) members of the family, or friends of an eligible living or deceased infected person, whose relationship with them was so close that it could reasonably be expected that their mental or physical health would be seriously affected by the consequences of the disease, and who have suffered emotionally, mentally and/or physically as a result.

I recommend that infections eligible for compensation should be classified in the following manner: a) there should be defined categories for each type of eligible infection, and the stages through which it progresses, and for each category defined degrees of severity to which a range of possible awards for the impact of the disease can be applied; b) the stages and degrees of severity for each disease should be defined by an independent clinical expert advisory panel, by reference to clinical professional consensus; c) the range of potential awards for the impact should be determined by an independent advisory panel of legal experts, taking account of but not limited by current practice in courts and tribunals across the UK.

I recommend that the appropriate award in any case should be composed under the following categories of loss, applicable to both eligible infected and affected persons: a) an Injury Impact Award for past and future physical and mental injury, emotional distress and injury to feelings caused by the infection and treatments for it, or (whilst not being personally infected) being affected by them or by the death of an eligible infected person (including, as part of this, an award for loss of society of the deceased); b) a Social Impact Award for past and future social consequences of the infection including stigma and social isolation; c) an Autonomy Award as additional redress for the distress and suffering caused by the impact of the disease, including interference with family and private life, including where relevant: personal autonomy, loss of marriage/partnership prospects, loss of chance to have children. It should include sums for the aggravated distress caused by interferences in their autonomy and private life such as lack of informed consent, lack of sufficient information about the risks of treatment, and about diagnosis, treatment and testing, or being the subject of research without their informed consent. It should include the effects of lack of candour and inadequate responses by authority. d) a Care Award for the future care needs of the eligible infected person, and to compensate for past losses in respect of care necessitated by their infection (to be paid directly to the infected person where they have paid for care, and/or directly to an affected person who has provided care); and e) a Financial Loss Award for past and future financial losses suffered as a result of the infection.

I recommend that the Government should approve a scheme setting out a framework of tariff based compensation for eligible infected and affected persons, at rates which broadly take account of but are not limited by current practice in courts and tribunals across the UK and sums payable in other UK compensation schemes, and allowing an assessed basis for defined financial losses. The rates of compensation should be based on the advice of the independent clinical and legal panels and set by the scheme.

I recommend that, with reference to the status of awards: a) eligible infected and affected persons should not be required to accept the offer of an award in full and final settlement of any right to pursue legal actions related to the infection; b) any accepted scheme award should be set off against any entitlement to damages for the same subject matter; c) the availability of an award under the scheme should be a factor to which the court could have regard when determining liability for costs in any court proceedings related to the infection.

I recommend that: a) awards should be made in a lump sum in respect of an Injury Impact Award, Social Impact Award, Autonomy Award, and an award to compensate for past losses under the Care Award and Financial Loss Award for infected and affected persons; b) at the option of the applicant, for continuing future losses under the Care Award and Financial Loss Award, there should be paid either a lump sum award or payment by way of guaranteed periodical payments uplifted annually for inflation for life, or the predicted period of the loss, if earlier; c) an infected person should have the option of receiving a lesser lump sum as a provisional award (i.e. one assessed on the footing that as a result of receiving infected blood or blood products or tissue transfer there is a chance that at some definite or indefinite time in the future they will develop some serious disease or suffer some serious deterioration in their physical or mental health) such that in that case they may return to the scheme, or in accordance with arrangements to be made by the scheme, for further compensation then to be paid in respect of the newly developed disease or deterioration; and d) unless the option to have a provisional award is taken, all awards should be final.

I recommend that interest be payable on awards for past financial losses and past provision of care, from the date of infection to the date of the award, in accordance with the practice in personal injury damages claims; alternatively, that such awards are uplifted for inflation during that period.

I recommend that an interim payment of £100,000 should be paid to recognise the deaths of people to date unrecognised and alleviate immediate suffering. This should be done as follows: a) where someone infected died as a child or died as an adult without a partner or child, the interim payment should be made to their bereaved parents (split equally if separated); b) where someone infected has died and there is no bereaved partner but there is a bereaved child or children (including any adopted child), the interim payment should be paid to the child or children (split equally); and c) where someone infected has died and there is no bereaved partner, child nor parent but there is a bereaved full sibling or siblings, the interim payment should be paid to the sibling or siblings (split equally).

I recommend that, with regard to the relationship between compensation, support payments and benefits: a) in assessing compensation under the scheme, no account should be taken of any past payments made under the support schemes or their predecessors; b) the current annual payments under the support schemes should be continued (or merged into the compensation scheme) and guaranteed for life, by legislation or secure government undertaking; c) such continued payments should be taken into account in assessing awards for future financial loss or care provision; d) such deductions as would be made from damages under the Social Security (Recovery of Benefits) Act 1997, but no other, should be made in respect of equivalent awards under the scheme; e) awards of financial loss should be made net of tax, but the awards themselves should not be liable to taxation, and should be regarded for tax purposes as if they were support payments; f) any lump sum award under the scheme should be made exempt from inheritance tax by an equivalent addition to the inheritance tax free allowance of the recipient.

I recommend that an Arms Length Body (ALB) should be set up to administer the compensation scheme, with guaranteed independence of judgement, chaired by a judge of High Court or Court of Session status as sole decision maker, transparent in its procedures so far as the law permits and accountable directly to Parliament for the expenditure of public funds and the fulfilment of its terms of reference. Appeals should be to a bespoke independent appeal body with a legal chair which will reconsider the decision of the scheme in any case appealed to it. The scheme should have procedures in accordance with the principles set out in this report and in particular which: a) have regard to the need of applicants for speed of provision, simplicity of process, accessibility, involvement, proactive support, fairness and efficiency; b) involve potentially eligible persons and their representatives amongst those in a small advisory board, and in the review and improvement of the scheme; and c) permit the hearing of applicants in person. d) should have access to the records held by or on behalf of any previous publicly funded support scheme (subject to any necessary consents by the data subjects), and take into account the reasoning of any appeal from the decisions it takes.

I recommend that the scheme should include provision of the following support services to be provided without charge to the applicant: a) an advice and advocacy service, supplemented where necessary by discretionary access to independent legal advice and representation, where necessary and within a pre-authorised budget, to assist and advise applicants; b) a financial, insurance and benefits advice and support service, to assist recipients in accessing financial and insurance services and obtaining any relevant benefits; and c) advice and referral to appropriate specialist services, signalling or certifying access to any special arrangements.