empty hospital bed, health

Table of contents

Approximate read time: 20 minutes

1. What was infected blood and how was it used?

In the 1970s, the NHS could not meet the demand for blood domestically. One factor causing rising demand was the invention and roll-out of new treatments made from blood products.[1] The NHS sourced around 50% of its blood and blood-derived products from abroad, including the USA. In the USA, donors were paid for giving blood, which attracted people from groups which were more likely to have hepatitis C or HIV. Blood was initially not screened for the viruses.

In 1975, the UK government committed to self-sufficiency of blood stock in the NHS by July 1977.[2] The Department of Health allocated £0.5mn to the goal. Contemporary comment in the British Medical Journal noted that the goal was not met. In addition to the need for donors, the UK’s ability to process blood into products required by people with clotting problems was struggling to scale up with demand. The UK continued to rely on imported blood.

Blood services only began routinely screening for hepatitis B in 1972, for HIV in 1985, and for hepatitis C in 1991.[3]

Today, donated blood is tested for a range of infections.[4] The NHS occasionally imports “very small quantities of very rare blood for named patients when there is no UK donor available” but otherwise does not import blood products from outside the UK.[5]

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2. Who has been impacted?

Blood transfusions were a part of treatment for a range of NHS patients.[6] Some people received contaminated blood transfusions after childbirth, surgery, or major trauma. The infected blood inquiry estimates between 80 and 100 people were infected with HIV and about 27,000 with hepatitis C in these circumstances.

There was also a significant impact for people with haemophilia, a rare genetic condition which causes a shortage of a clotting agent in blood, as well as people with other clotting disorders.[7] In the 1970s, a treatment was developed to use donated blood to create replacement clotting agents. The treatment was made in large batches, which pooled plasma from thousands of donors. If one donor was infected, the batch was contaminated.

The Haemophilia Society has reported that around 1,250 people were infected with HIV, including 380 children. Another 2,400 to 5,000 people developed hepatitis C. Children at the specialist school Treloar, which had a haemophilia treatment centre, were infected in large numbers. Children across the UK were used to trial new treatments without their or their parents’ knowledge.[8]

Symptoms would not have appeared immediately and therefore some people unknowingly passed infections to their partners.[9]

The inquiry often refers to ‘the infected and affected’. The affected are the people who have cared for, and in some cases lost, partners or family members.

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3. When was the infected blood inquiry launched and what were its aims?

On 11 July 2017, the then prime minister, Theresa May, announced a public statutory inquiry.[10] This followed years of campaigning by affected groups, their supporters and parliamentarians. The infected blood inquiry is chaired by Sir Brian Langstaff, a former High Court judge. The inquiry website describes its purpose:

The inquiry will examine why men, women and children in the UK were given infected blood and/or infected blood products; the impact on their families; how the authorities (including government) responded; the nature of any support provided following infection; questions of consent; and whether there was a cover-up.[11]

Evidence was taken from summer 2018 to February 2023. On 20 September 2023, the inquiry announced a delay in the publication of its final report. Sir Brian said:

When we completed the last hearings, the question I was most asked was when we would publish. I said it would be late autumn. I have been obliged to recognise that the sheer volume and scale of the material that needs to be explained, the weight of criticisms made of individuals and organisations, and the way we are legally required to deal with them, mean that this is simply not realistic.[12]

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4. What did the inquiry say in its interim reports, and who received interim compensation?

The inquiry published two interim reports. The first report followed a separate independent review by Sir Robert Francis, published 7 June 2022, which looked at compensation options.[13] Sir Robert is a barrister specialising in medical law.[14] He put forward a possible compensation model and recommended that interim payments of no less than £100,000 be made ahead of the establishment of a compensation scheme.[15]

The first interim report recommended that the government follow Sir Robert’s recommendation to make interim payments “without delay”.[16] Sir Robert said payments should be made to people who were infected and bereaved partners currently registered with NHS support schemes,[17] “and those who register between now and the inception of any future scheme”.[18]

The first support scheme was established in 1989, providing financial support to people infected with HIV from contaminated blood products. From 2004, a government fund supported people who acquired hepatitis C through infected blood products. In 2017, country-specific support schemes were set up in England, Northern Ireland, Scotland and Wales.[19]

In 2022, the government accepted the recommendation to make interim payments.[20] Interim payments were made in October 2022.[21] This was welcomed by campaigners, though they highlighted groups not included, for example bereaved parents, and urged the government not to delay a full compensation scheme.

The inquiry published a second interim report on 5 April 2023.[22] Chair Sir Brian Langstaff acknowledged that it was unusual for inquiries to publish recommendations before they had concluded. However, he said “many who should benefit from compensation are now on borrowed time”. He recommended that interim payments should be extended to bereaved parents, children or siblings of infected people, with a full compensation scheme to be set up and begin work in 2023.

Jeremy Quin, then paymaster general, made a statement in the House of Commons following the second interim report.[23] Mr Quin welcomed the report, but noted that the inquiry’s suggested compensation structure differed in some aspects from the recommendations in Sir Robert Francis’ independent review, and therefore the recommendations needed “careful consideration”. In a previous statement on 15 December 2022, Mr Quin confirmed that the government agreed there was a “moral case for the payment of compensation”.[24]

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5. What did the infected blood inquiry say in its final report?

The inquiry’s final report ran to seven volumes.[25] The summary reported there had been:

[…] systemic, collective and individual failures to deal ethically, appropriately, and quickly, with the risk of infections being transmitted in blood, with the infections when the risk materialised, and with the consequences for thousands of families.

In the context of ethical failures, Sir Brian Langstaff pointed to a number of factors, including the intentional destruction of some documents and the decision of government to use phrases such as ‘no conclusive proof’ (of a link between blood products and HIV) to give “false comfort” and misrepresent risks. Sir Brian said in a statement on the report’s publication:

This disaster was not an accident. People put their faith in doctors and in the government to keep them safe and their trust was betrayed […] The NHS and successive governments compounded the agony by refusing to accept that wrong had been done. More than that, the government repeatedly maintained that people received the best possible treatment and that testing of blood donations began as soon as the technology was available. And both claims were untrue.[26]

Sir Brian stated that the government, over successive administrations, blood services and doctors knew since the mid-1940s that blood could transmit hepatitis. He said that patients were not given adequate information to assess the risks. He also highlighted World Health Organization advice from the 1950s, which warned of the risks, as well as ways to minimise them, like heat-treating blood, and restricting who could donate.

The report’s recommendations included:[27]

  • Immediate set up of a compensation scheme.
  • Public recognition, including a formal, “meaningful” apology.
  • A permanent memorial, potentially in each nation of the UK, as well as a memorial specifically for the children infected at Treloar school.
  • Funding for support events for infected and affected people.
  • The incorporation of the report’s lessons to be learned (around issues such as patient safety and risk) to be included in medical training.
  • Permanent maintenance of the inquiry’s website, including evidence.
  • ‘Duties of candour’ should be reviewed or strengthened in health services (as applicable), providing clear information to patients when an incident has taken place.
  • Individuals in leadership positions should be required by terms of appointment and secondary legislation to record, consider and respond to any concern about the healthcare being provided, or the way it is being provided, where there reasonably appears to be a risk that a patient might suffer harm, or has done so. Any person in authority to whom such a report is made should be personally accountable for a failure to consider it adequately.
  • Regulation of healthcare should be simplified.
  • Before the end of 2027 there should be a formal, publicly reported audit of the extent of patient record digitisation.
  • National healthcare administrations should coordinate their approaches to patient data to ensure that patterns of harm are identified.
  • The “defensive culture” in the civil service and government should be ended, and the government should consider whether to continue to rely on the current non-statutory duties in the civil service code and ministerial code, as well as the powers of courts, inquests and inquiries where relevant, to find out the truth.
  • There should be a statutory duty of accountability for senior civil servants on ‘candour and completeness’ of advice to permanent secretaries and ministers.
  • The government should consider the extent to which ministers should be subject to a duty beyond their current duty to Parliament under the ministerial code.
  • Patients with hepatitis C should receive certain care related to liver damage, including regular scans and annual clinical reviews.
  • Tranexamic acid, a treatment which reduces the likelihood of life-threatening bleeding and therefore the need for blood transfusions, should be considered a “treatment of preference” and its use increased in hospitals.
  • Transfusion labs should be adequately staffed and resourced.
  • A framework should be established for recording the outcomes of recipients of blood components, with funding provided for digital systems.
  • NHS practices should routinely ask new patients whether they had a blood transfusion before 1996 to find undiagnosed patients.
  • There should be peer review of haemophilia care, including a review of each centre at least once every five years.
  • Patients should be given a voice through a range of measures including patient satisfaction or concern being measured in clinical audit, and funding being provided to certain charities for patient advocacy.
  • If a minister does not call a public inquiry, but there is “sufficient support” for one in Parliament, the matter should be referred to the House of Commons Public Administration and Constitutional Affairs Committee (PACAC) to make a recommendation to the minister.

The report stated that the government should consider and decide to implement, or not with detailed reason, each of the inquiry’s recommendations within the next 12 months. The government should report to Parliament on progress made during the year, and PACAC should review progress.

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6. What happened under the Sunak government?

On 20 May 2024, following the report’s publication, the then prime minister, Rishi Sunak, made a statement to the House of Commons. He said it was “a day of shame for the British state”.[28] Mr Sunak restated some of the report’s findings and offered an apology:

I want to make a wholehearted and unequivocal apology for this terrible injustice. First, I want to apologise for the failure in blood policy and blood products, and the devastating—and so often fatal—impact that had on so many lives, including the impact of treatments that were known or proved to be contaminated; the failure to respond to the risk of imported concentrates; the failure to prioritise self-sufficiency in blood; the failure to introduce screening services sooner; and the mismanagement of the response to the emergence of AIDS and hepatitis viruses among infected blood victims.

Secondly, I want to apologise for the repeated failure of the state and our medical professionals to recognise the harm caused. That includes the failure of previous payments schemes, the inadequate levels of funding made available, and the failure to recognise hepatitis B victims.

Thirdly, I want to apologise for the institutional refusal to face up to these failings—and worse, the denial and even the attempt to cover them up—the dismissing of reports and campaigners’ detailed representations; the loss and destruction of key documents, including ministerial advice and medical records; and the appalling length of time it took to secure the public inquiry that has delivered the full truth today.

There is layer upon layer of hurt, endured across decades. This is an apology from the state to every single person impacted by this scandal. It did not have to be this way. It should never have been this way. On behalf of this and every government stretching back to the 1970s, I am truly sorry.[29]

Mr Sunak committed to compensation according to the report’s recommendations. He said that the other recommendations would be studied in detail “before returning to the House with a full response”.

Keir Starmer, then leader of the opposition, also apologised, acknowledging that there had been a failure of “all parties”.[30] Mr Starmer said that Labour would work with the government to make sure compensation could be paid swiftly.

In April 2024, a Labour amendment to the Victims and Prisoners Bill was agreed in the House of Lords which required a final compensation scheme to be put in place within three months of the bill becoming law.[31] The bill received royal assent on 24 May 2024, so the compensation scheme was required to be in place by 24 August 2024.[32]

On 21 May 2024, John Glen, then paymaster general, made a statement in the House of Commons on compensation scheme arrangements and a summary was published on the government’s website.[33] Mr Glen said that the government was establishing the Infected Blood Compensation Authority, an arm’s length body, to administer the compensation scheme, with Sir Robert Francis as interim chair.[34] He said that infected people, and their estates if they had died, would be eligible to claim, as well as “partners, parents, siblings, children, friends and family who have acted as carers for those who were infected”. Mr Glen said that Sir Robert would seek the views of the infected blood community on the proposed scheme before its terms were set in regulations.

The scheme would provide the choice of lump sums or regular payments, and the money would be “exempt from income, capital gains and inheritance tax”, as well as disregarded “from means-tested benefit assessments”. He said that the “expectation is that final payments will start before the end of the year”.

For people who had been receiving support payments, he set out how those payments would interact with the compensation scheme:

Payments will continue to be made at the same level until 31 March 2025, and they will not be deducted from any of these compensation awards. From 1 April 2025, any support scheme payments received will be counted towards a beneficiary’s final compensation award. This will ensure parity between support scheme beneficiaries regardless of whether they were the first or the last to have their compensation assessed by the Infected Blood Compensation Authority. We will ensure that no one—no one—receives less in compensation than they would have received in support payments.

Mr Glen also announced that interim payments of £210,000 would be delivered within 90 days. He explained that the figure was due to him “trying to get the maximum amount that could be universally paid, as quickly as I could, to those who are infected and alive without any risk of paying the wrong amount, and that is the amount that I was advised”.[35]

A written answer on 2 August 2024 detailed that in June 2024, the government paid £728.91mn in interim compensation payments to 3,659 people who were infected and registered with a support scheme.[36]

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7. What has happened under the Starmer government?

On 26 July 2024, Nick Thomas-Symonds, paymaster general and minister for the cabinet office, provided an update to the House of Commons on the government’s progress in responding to the infected blood inquiry’s report.[37] He said that the government intended to “bring forward legislation to place a duty of candour on public servants and authorities to make sure that this kind of behaviour cannot happen again”. This bill is referred to in the Cabinet Office briefing notes for the July 2024 King’s Speech as the ‘Hillsborough law’.[38] The briefing notes stated that the bill would be delivered alongside improved assistance for bereaved persons and core participants at public inquiries, and that the government would deliver on its manifesto commitment to provide legal aid to victims of state-related death.

On compensation, Mr Thomas-Symonds said that a process was being established for making interim payments of £100,000 to the estates of deceased people who were infected with contaminated blood or blood products. He announced that applications for payments would open in October 2024.[39]

Regarding the final compensation scheme, Mr Thomas-Symonds pointed to the draft scheme published by the previous government in May and said that Sir Robert Francis had been conducting an engagement exercise on its contents with those impacted. He added that the government expected final compensation payments to start being paid from the end of 2024.[40] Following the engagement exercise’s conclusion, secondary legislation enabling the scheme to start paying out to infected people, the Infected Blood Compensation Scheme Regulations 2024, was laid on 23 August 2024 under the made affirmative procedure.[41]

An accompanying policy paper set out that the scheme “will use a tariff-based framework to calculate the amount of compensation payable to those eligible. In practice, this means that compensation will be calculated based on set criteria and rates”.[42] Compensation for individuals will be based on the severity of their infection, as well as five categories of award:

  • Injury impact: This recognises the physical and mental injury, as well as emotional distress resulting from infection, related medical treatments, and/or the death of a loved one.
  • Social impact: This recognises social impacts, past and future, including stigma and isolation.
  • Autonomy: This recognises impact on family and private life, for example the loss of opportunity to have children.
  • Care: This recognises the past and future care needs and associated costs for infected people.
  • Financial loss: This recognises the financial consequences of infection, including the loss of potential earnings.

The policy paper confirmed that people already receiving support payments will continue to receive them, and those payments will be taken into account in the awarding of final compensation. Interim payments already received will also be deducted from total awards. Infected people, and people representing the estates of infected people, will be able to claim compensation under the secondary legislation laid in August 2024. The Infected Blood Compensation Authority will handle compensation for all nations of the UK, with payments coming from the UK government for all claimants. The government also published an explanatory memorandum.[43]

Speaking in the House of Commons on 2 September 2024, Mr Thomas-Symonds said that another set of regulations would be laid to enable compensation for affected people and to provide supplementary awards. These awards will include an additional £10,000 for those who were subject to unethical medical research, raised to £15,000 for those who were subject to research at Treloar school as children.[44] Payments are expected in 2025.

Responding to a question about the accountability of individuals, Mr Thomas-Symonds said that he had written to the National Police Chiefs’ Council “to make it clear that the Cabinet Office and, indeed, the government will cooperate fully and make any evidence within our control and possession available, as appropriate, so that decisions can be made about people being held to account”.[45]

MPs broadly welcomed the statement, though some urged the government to provide more detailed timelines, and others questioned whether the additional awards for those subjected to unethical medical research were high enough.[46]

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Cover image by freepik.

This article was updated on 4 September 2024 to include information on the new Labour government’s recent activity.

References

  1. The Hepatitis C Trust, ‘The infected blood inquiry’, accessed 4 September 2024. Return to text
  2. David Armstrong, ‘Infected blood: A medical history’, King’s College London, from evidence to the infected blood inquiry, 3 October 2023. Return to text
  3. Public Health England, ‘Information for GPs on the infected blood inquiry’, July 2019. Return to text
  4. NHS Blood and Transplant, ‘Tests we carry out on donated blood’, accessed 4 September 2024. Return to text
  5. NHS Blood and Transplant, ‘Frequently asked questions’, accessed 4 September 2024. Return to text
  6. The Hepatitis C Trust, ‘The infected blood inquiry’, accessed 4 September 2024. Return to text
  7. The Haemophilia Society, ‘The contaminated blood scandal’, accessed 4 September 2024. Return to text
  8. BBC News, ‘Infected blood scandal: Children were used as ‘guinea pigs’ in clinical trials’, 18 April 2024. Return to text
  9. The Haemophilia Society, ‘The contaminated blood scandal’, accessed 4 September 2024. Return to text
  10. Prime Minister’s Office, ‘PM statement on contaminated blood inquiry’, 11 July 2017. Return to text
  11. Infected Blood Inquiry, ‘Explore the inquiry’, accessed 4 September 2024. Return to text
  12. Infected Blood Inquiry, ‘Publication of the inquiry report’, 20 September 2023. Return to text
  13. Cabinet Office, ‘Compensation and redress for the victims of infected blood: Recommendations for a framework’, 7 June 2022. Return to text
  14. Florence Nightingale Foundation, ‘Sir Robert Francis KC’, accessed 4 September 2024. Return to text
  15. Cabinet Office, ‘Compensation and redress for the victims of infected blood: Recommendations for a framework’, 7 June 2022. Return to text
  16. Infected Blood Inquiry, ‘First interim report’, 29 July 2022. Return to text
  17. NHS Business Services Authority, ‘England infected blood support scheme’, accessed 4 September 2024. Return to text
  18. Infected Blood Inquiry, ‘First interim report’, 29 July 2022. Return to text
  19. The Standard, ‘Timeline of events leading up to the infected blood inquiry’, 20 May 2024. Return to text
  20. Cabinet Office, ‘Infected blood victims to receive £100,000 interim compensation payment’, 17 August 2022. Return to text
  21. Cabinet Office, ‘Infected blood interim compensation payment scheme’, 24 October 2022. Return to text
  22. Infected Blood Inquiry, ‘Second interim report’, 5 April 2023. Return to text
  23. HC Hansard, 19 April 2023, cols 258–74. Return to text
  24. HC Hansard, 15 December 2022, cols 1249–58. Return to text
  25. Infected Blood Inquiry, ‘The inquiry report’, 20 May 2024. Return to text
  26. Infected Blood Inquiry, ‘Official YouTube channel’, 20 May 2024 (video). Return to text
  27. Infected Blood Inquiry, ‘The inquiry report’, 20 May 2024. Return to text
  28. HC Hansard, 20 May 2024, col 665. Return to text
  29. HC Hansard, 20 May 2024, cols 666–7. Return to text
  30. HC Hansard, 20 May 2024, cols 667–8. Return to text
  31. BBC News, ‘Ministers accept three-month deadline for infected blood scheme’, 30 April 2024. Return to text
  32. UK Parliament, ‘Victims and Prisoners Act 2024’, accessed 4 September 2024. Return to text
  33. HC Hansard, 21 May 2024, cols 745–80; and Infected Blood Compensation Authority, ‘Infected blood compensation scheme summary’, 21 May 2024. Return to text
  34. HC Hansard, 21 May 2024, cols 745–8. Return to text
  35. HC Hansard, 21 May 2024, cols 751–2. Return to text
  36. House of Commons, ‘Written question: Blood: Contamination (1713)’, 2 August 2024. Return to text
  37. HC Hansard, 26 July 2024, cols 923–5. Return to text
  38. Prime Minister’s Office, ‘The King’s Speech 2024: Background briefing notes’, 17 July 2024, p 86. Return to text
  39. HC Hansard, 26 July 2024, col 925. Return to text
  40. HC Hansard, 26 July 2024, col 930. Return to text
  41. UK Parliament, ‘Made affirmative procedure’, accessed 4 September 2024. Return to text
  42. Cabinet Office, ‘Infected blood compensation scheme summary: August 2024’, 23 August 2024. Return to text
  43. Explanatory memorandum to the Infected Blood Compensation Scheme Regulations 2024. Return to text
  44. HC Hansard, 2 September 2024, col 75. Return to text
  45. HC Hansard, 2 September 2024, col 79. Return to text
  46. HC Hansard, 2 September 2024, cols 74–95. Return to text