The British Liver Trust welcomes long-awaited justice for victims of the contaminated blood scandal, including those affected by hepatitis B, as detailed in the final report of the Infected Blood Inquiry published today. Led by Sir Brian Langstaff, the report has unveiled a series of recommendations, with the principal one being that a compensation scheme should be set up now.
Between the late 1970s to early 1990s, tens of thousands of individuals received contaminated blood through the NHS exposing them to hepatitis B, hepatitis C and other blood-borne viruses with a hugely detrimental impact on individuals and their families.
Following sustained advocacy led by patients and charities, including the British Liver Trust, we are hopeful that the government will accept the recommendations in the interim and final Inquiry reports, and that compensation will be provided to all people affected, including those with hepatitis B who were exposed through NHS blood products.
Vanessa Hebditch, Director of Policy and Communications at the British Liver Trust said: “It is imperative that the UK Government takes swift and decisive action to implement the Infected Blood Inquiry recommendations.
“Tens of thousands of victims including those now living with hepatitis B have endured decades without truth, justice or compensation as a consequence of systemic failures by consecutive governments over more than six decades.
“Earlier detection and targeted screening of those at highest risk of hepatitis B is mission critical if the UK Government are to deliver on the World Health Organisation ambitious targets to eliminate viral hepatitis as a public health threat by 2030”.
If undetected, hepatitis B can result in liver scarring, cirrhosis and liver cancer. It often lacks symptoms in the early stages and patients are routinely diagnosed late when damage is irreversible and treatment options are limited.
It is also believed that thousands of people in the UK are living with an undiagnosed hepatitis C infection after being treated with contaminated blood. Hepatitis C poses a similar threat to hepatitis B in its ability to cause chronic liver disease if undetected.
The British Liver Trust provides vital information and support to people diagnosed with hepatitis B through access to patient information, support groups and a nurse led helpline.
FAQs
In the 70s, 80s and 90s, thousands of people in the UK were given blood transfusions or blood products that were infected with viruses such as Hepatitis B, Hepatitis C and HIV.
The Infected Blood Inquiry began on 2 July 2018. It aimed to examine why people 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.
The final Inquiry Report was published on 20th May 2024, which can be found here: Reports | Infected Blood Inquiry
Compensation and Recognition:
- A compensation scheme should be set up now.
- Permanent memorials should be erected across the UK.
Patient safety and healthcare improvement:
- Introduction of a statutory duty of candour in healthcare across the UK.
- Simplification and improvement of safety regulations in healthcare.
- Enhancement of patient records and digitalization across healthcare administrations.
Finding the undiagnosed
- When doctors become aware that a patient has had a blood transfusion prior to 1996, that patient should be offered a blood test for Hepatitis C.
- As a matter of routine, new patients registering at a practice should be asked if they have had such a transfusion.
Monitoring and care for Hepatitis C patients:
- Implementation of regular monitoring for liver damage, including fibroscans and specialist consultations.
- Ensuring commissioned hepatology services meet specific needs.
Learning and training:
- Medical training should incorporate lessons learned from the inquiry into clinical practices.
- A comprehensive archive of the inquiry’s findings should be maintained online for educational purposes.
Blood transfusions and patient safety
- Standardisation of transfusion practices and introduction of tranexamic acid as a preferred treatment in surgeries.
- Establishment of comprehensive frameworks for recording and improving outcomes of blood transfusions.
Support and advocacy
- Empowerment of patient voices through clinical audits and dedicated funding for patient advocacy organizations.
- Continued support for charities supporting those affected by hepatitis C and related conditions.
Government oversight and accountability
- Implementation of recommendations within a specific timeline, with parliamentary oversight and reporting.
- Consideration of statutory duties to ensure accountability in civil service and ministerial roles.
More than 30,000 people in the UK were given infected blood that had been infected with HIV and hepatitis C and over 3,000 people died. Compensation was initially provided to these patients and their families.
However, in the Contaminated Blood Inquiry’s Interim Report, it acknowledged for the first time that the compensation scheme should aim to redress those “infected with defined serious cases of hepatitis B”.
The blood services began routinely screening donations for hepatitis B in 1972, however, screening for HIV did not take place until 1985 and screening for hepatitis C in 1991. The report states that although blood products were tested for hepatitis B since the 1970s “the test was known to detect only one third to one half of infected donations.”. The “more accurate test” for hepatitis B was not rolled out until the early 1980s. The report concludes “people infected with chronic hepatitis B as a consequence of transfusion, blood products or tissue transfer should be compensated.”
The British Liver Trust is backing calls for an independent, arm’s length body, accountable to parliament to be set up, as recommended in the Final Report. Part of their role would be to agree exactly who with hepatitis B might have been infected and who should be provided with compensation. The Trust will be advocating on behalf of patients and families with hepatitis B to ensure that they get the consideration and support that they deserve.
If you believe you may have been exposed to hepatitis C through a blood transfusion or other means, you can request a free NHS hepatitis C test. To get tested, visit https://hepctest.nhs.uk for more information.
If you are concerned about hepatitis B, you can ask your GP to request a blood test. It’s important to clarify that you want a hepatitis B test, not general tests for liver health.
If you believe you have been diagnosed from infected blood or blood products then you can claim via the following governmental organisations.
You should apply to the scheme in the country where you received the infected blood.
England Infected Blood Support Scheme
Tel: 0300 330 1294
Email: nhsbsa.eibss@nhs.net
Scotland Infected Blood Support Scheme
Tel: 0131 295 6754
Email: NSS.SIBSS@nhs.net
Wales Infected Blood Support Scheme
Tel: 02920 902 280
Email: wibss@wales.nhs.uk
Northern Ireland Blood Support Scheme
Tel: 02895 363 817
Email: bso.ibss@hscni.net
The wellbeing of people participating in the Inquiry is extremely important to the Chair, Sir Brian Langstaff. The Inquiry is funding a confidential support service for anyone affected by treatment with infected blood or blood products. This is run by a team from the British Red Cross who have been working with the Inquiry since September 2018.
You can contact the confidential support service directly by calling 0800 458 9473 or 0203 417 0280 at these times:
- Monday between 11am and 1pm
- Wednesday between 7pm and 9pm
- Friday between 2pm and 4pm
You can also leave a message at another time and the team will call you back as soon as possible, and on the same day where that is practical. When returning calls their number will appear as private or withheld number.
The psychological support being used by people affected by the work of the Inquiry has additional capacity should it be needed. You can call during the hours advertised on the Inquiry’s website, or leave a message and receive a call back at a time convenient to them. The Inquiry keeps the level of this service under review to make sure it is sufficient and there is currently additional capacity should people want to use it.
The British Liver Trust will be working closely with other organisations and clinicians to call for the Infected Blood Inquiry’s recommendations to be implemented swiftly.
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For those who are concerned about the risk of HIV infection, further information can be found here.