Andrew Eborn is committed to righting wrongs and shedding light on particular issues which often battle alone.
The infected blood scandal – the biggest treatment disaster in NHS history.
BACKGROUND
During the 1970s and 1980s patients with various blood disorders around the world including in UK, Japan, Canada and Australia were given contaminated blood or blood products infected with Hep B, Hep C , HIV or vCJD.
Some people were co-infected with more than one of those life changing viruses.
The blood had been distilled from thousands of prisoners some of whom were paid. The blood had not been screened.
Andy Burnham, Mayor of Greater of Manchester and former Secretary of State, used his last speech in Parliament to call it a “criminal cover up on an industrial scale” To date this has cost 3000 lives, people are still dying at the rate of 3 people per week. It is the worst treatment disaster in NHS history.
GET TESTED. GET TREATED. GET CURED.
It is not just hemophiliacs who were given American Factor 8 but could be anyone who had a blood transfusion pre 1991. There are many, many people out there who have suffered years of ill health and never been tested. One victim was given blood infected with Hepatitis C back in the 1980s but remained undiagnosed until 2014. In the intervening period she suffered many and various illnesses, some of them serious, but never had the possibility been put to her that Hep C could be the cause. “I had literally hundreds of blood tests over those intervening years but, it would appear, never one for Hepatitis. I, along with what the government say is 35000 others, but the statisticians believe is almost certainly 300,000, people were given blood , or blood products infected with Hep B, Hep C , HIV or VCJD. Some people were co-infected with more than one of those life changing viruses.
“There are many, many people out there who have suffered years of ill health and never been tested.
It has been my mission ( sorry, bit of a pompous word) since my diagnosis, to inform as many people as I can….This could be you, or someone you know.”
On 11th July 2017 Prime Minister Theresa May ordered an inquiry for victims and families into the “appalling tragedy” of contaminated blood scandal of the 1970s and 1980s.
https://www.gov.uk/government/news/pm-statement-on-contaminated-blood-inquiry-11-july-2017
Prime Minister Theresa May said:
Thousands of patients expected the world-class care our NHS is famous for, but they were failed.
At least 2,400 people died ( now over 3,000 July 2022 ) and thousands more were exposed to Hepatitis C and HIV, with life-changing consequences.
The victims and their families who have suffered so much pain and hardship deserve answers as to how this could possibly have happened.
While this government has invested record amounts to support the victims, they have been denied those answers for too long and I want to put that right.
As Prime Minister, I am determined to stand up for victims and confront injustice and unfairness in our society at every turn.
We will work with the victims and their families to decide what form this inquiry should take so their voices are heard and they finally get the answers and justice they have spent decades waiting for.
THE INFECTED BLOOD INQUIRY
This is an independent public statutory Inquiry established to examine the circumstances in which men, women and children treated by national Health Services in the United Kingdom were given infected blood and infected blood products, in particular since 1970.
https://www.infectedbloodinquiry.org.uk/
INFECTED BLOOD INQUIRY
TERMS OF REFERENCE
What happened and why?
- To examine the circumstances in which men, women and children1 treated by national
Health Services in the United Kingdom (collectively, the “NHS”)2 were given
infected blood and infected blood products, in particular since 1970, including:
a. the treatment of men, women and children who were given infected blood or
infected blood products through transfusion or other means;
b. the treatment of men, women and children with haemophilia or other bleeding
disorders who were given infected blood products (recognising that the
position of those with mild, moderate and severe bleeding disorders may
require separate consideration during the Inquiry);
c. what was, or ought to have been, known at any relevant time about the risks of
infection associated with blood donations and blood products, by Government
(in particular the Department of Health3
), pharmaceutical companies, any
relevant licensing authorities, NHS bodies, the medical profession, and other
organisations or individuals involved in decision-making in relation to the use
of blood and blood products;
d. to what extent people given infected blood or infected blood products were
warned beforehand of the risk that they might thereby be exposed to infection,
and if so whether such warnings as were given were sufficient and
appropriate;
1 Including all gender identities. 2 References to NHS used throughout is intended to encompass the National Health Service in England,
Health and Social Care in Northern Ireland, NHS Scotland, NHS Wales and their predecessors.
3 References to Department of Health used throughout is intended to encompass the Department of Health
and Social Care, the Department of Health in Northern Ireland, Health and Social Care Directorates of the
Scottish Government, the Department for Health and Social Services in Wales and their predecessors.
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e. the adequacy of the systems adopted for the screening of donors, and the
collection, testing, licensing and supply of blood and blood products for use by
the NHS;
f. the United Kingdom’s failure to become self-sufficient in the production of
blood products (and consideration of any relevant differences in terms of selfsufficiency between England, Wales, Scotland and Northern Ireland);
g. the actions of Government (in particular the Department of Health),
pharmaceutical companies, licensing authorities, NHS bodies, the medical
profession, and other organisations or individuals involved in decision-making
in relation to the use of blood and blood products;
h. why people were given infected blood or infected blood products, including
the nature and extent of any commercial or other interests which may have
affected decision-making;
i. the extent to which the supply of infected blood or infected blood products
could, and if so, should, have been avoided or been stopped earlier, and if so
how best this might have been achieved. - To ascertain, as far as practicable, the likely numbers of people who have been
infected (directly or indirectly) in consequence of:
a. the use of infected blood; and
b. the use of infected blood products. - To examine whether, in addition to the HIV, Hepatitis C and Hepatitis B (“HCV” and
“HBV”) viruses with which it is known that people were infected, people may have
been exposed to the risk of other diseases (such as vCJD) in consequence of the use of
infected blood or infected blood products.
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Impact - To consider the impact of infection from blood or blood products on people who were
infected (“those infected”) and on partners, children, parents, families, carers and
others close to them (“those affected”), including:
a. the mental, physical, social, work-related and financial effects of:
i. being infected with HIV and/or HCV and/or HBV in consequence of
infected blood or infected blood products;
ii. the treatments received for these infections;
b. the extent to which treatment, medical and dental care for other conditions was
compromised by perceived infective status;
c. the impact of these infections on partners, children, parents, families, carers
and others close to those infected, including the impact on those who suffered
bereavement; children who were taken into care; those who were advised to,
or did, terminate pregnancies; and those who had to take difficult decisions
about whether or not to have children;
d. the wider social impact on those infected and affected, including the stigma
associated with a diagnosis of HIV and/or HCV and/or HBV.
The response of Government and others - To examine:
a. the nature, adequacy and timeliness of the response of Government (in
particular the Department of Health), NHS bodies, other public bodies and
officials, the medical profession, the UK Haemophilia Centre Doctors
Organisation, the pharmaceutical industry and other organisations (including
the Haemophilia Society), to the use of infected blood or infected blood
products to treat NHS patients;
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b. the nature and extent of any attempt to identify those who may have been
infected and might benefit from treatment, to include the adequacy of any
“look back” exercise;
c. whether Government or the NHS could or should have done more to counter
any stigma associated with these infections.
Consent - To examine:
a. whether and to what extent people were treated or tested or their infection
status was recorded without knowledge or consent;
b. the testing or treatment of a category of patients referred to as Previously
Untreated Patients (“PUPS”).
Communication and information-sharing - To examine the adequacy of the information provided to people who were infected or
affected, including:
a. the nature, adequacy and timeliness of the information provided to those
infected about their condition(s);
b. how the results of tests or information about their condition(s) were
communicated to those infected;
c. whether, and if so what, information should have been provided to those most
closely affected by the infection of a patient about that infection and any
consequent risk to them.
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Treatment, care and support - To consider the nature and the adequacy of the treatment, care and support (including
financial assistance) provided to people who were infected and affected (including the
bereaved), including:
a. whether and to what extent they faced difficulties or obstacles in obtaining
adequate treatment, care and support;
b. the availability and adequacy of any counselling or psychological support for
those infected or affected;
c. the actions of the various Trusts and Funds set up to distribute payments;
d. the differing criteria for eligibility for financial assistance applied by the
various Trusts and Funds, the justification (if any) for such differences and
whether such differences were or are equitable;
e. the appropriateness of preconditions (including the waiver in the HIV
Haemophilia Litigation) imposed on the grant of support from the Trusts and
Funds;
f. the extent of any differences in the arrangements made for financial assistance
between England, Wales, Scotland and Northern Ireland;
g. a broad consideration of the extent to which support is and has been
comparable with support for those similarly infected and affected in other
countries, for example, Canada and EU nations, such as France and Ireland.
Candour, openness and cover-up? - To examine whether:
a. there have been attempts to conceal details of what happened (whether by
destroying documents or withholding information or failing to include
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accurate information in medical records or otherwise), and if so the extent to
which those attempts were deliberate;
b. there has been a lack of openness or candour in the response of Government,
NHS bodies and/or other bodies and officials to those infected or affected.
Responsibilities - To identify, in relation to the matters set out above, any individual responsibilities as
well as organisational and systemic failures.
Recommendations - If the Inquiry considers it appropriate, to make interim recommendations.
- To report its findings to the Minister for the Cabinet Office, and to make
recommendations, as soon as practicable.
LINKS
http://hepctrust.org.uk/
The Hepatitis C Trust is the national UK charity for hepatitis C with offices in London and Falkirk. It has been operating since 2001. It is a patient-led and patient-run organisation: most of the board, staff, and volunteers have had hepatitis C and have cleared it after treatment.
