Contaminated Blood Background Documents The worst treatment disaster in the history of the NHS
Dec 18, 2015
Support Documents
• Haemophilia Society, Manor House Group, Taintedblood – Who are we ?
• History• Government knowledge of risks• HIV / HCV Infection rates• Archer Report / Contaminated Blood Bill• Compensation schemes to date• Legal Actions• Politician Quotes• Personal Stories• Pre-election pledges• Personal stories
Who are we ?
• The Haemophilia Society - is the only national and independent organisation for all people affected by bleeding disorders. The Society is led by affected people and works in close partnership with the NHS. We provide information and support for people affected by bleeding disorder and represent their interests. www.haemophiliac.org.uk
• Manor House Group – Fighting for Haemophiliacs Infected with Hepatitis C. Formed on 10th July 1993, the group was formed to bring awareness to liver disease in haemophiliacs. Manor House Group is a registered charity and have a large following across the country. www.manorhousegroup.co.uk
• taintedblood exists solely to support and to achieve justice for those infected and affected by contaminated blood and blood products in the United Kingdom and to ensure that all steps are taken to avoid any repetition of this disaster. The taintedblood committee consists of people who all are either directly affected by contaminated blood or are bereaved from someone affected. They all act in a purely voluntary capacity and are dedicated to achieving the aims of the group. www.taintedblood.info
History• Late 1970s and early 1980s 4,670 British haemophiliacs infected with HIV
and or Hepatitis C ( HCV)– 1,243 HIV – 4,670 HCV
• Contaminated blood sourced from UK and abroad• NHS treatment• No statutory public inquiry• No meaningful debate in House of Commons
To date 1,974 people have died as a result of their infections. Fathers, sons, husbands, brothers.
Those infected continue to die at rate of around 1 per month
Government Knowledge of Risks• Government knew of the risks of importing blood product by mid 1970s
– WHO advice in 1975 to become self sufficient– David Owen steps to become self sufficient - 1975– DOH officials appreciate concerns over imported blood - 1978
• BPL inspected in 1979 and found to be not fit for purpose• Government hid behind Crown Immunity to dispense with the
requirements of Medicines Act 1968
Either through inability to become self sufficient despite multiple warnings, or by ignoring the warnings of imported blood
products , Government knew that risks were being taken in exposing haemophiliacs to blood bourne viruses.
HIV / HCV Infection Rates
UK IrelandTotal Infected Total Infected
4670 400
HIV HCV HIV HCV1243 4530* 104 221
26.6% 97.0% 26.0% 55.3%
•UK infection rate of HCV almost double that seen in Ireland despite similar sourcing of blood product
•UK HCV infection rate higher than US ( 65% )
WHY ?
•* estimated
Archer Report / Contaminated Blood Bill
• Archer Report published 23rd February 2009– Statutory committee to advise Government– Haemophiliacs tested for listed direct diseases– Every blood donor tested for listed diseases– NHS treatment not freely available on NHS– Secured future for Haemophilia Society– Direct financial support– Insurance scheme– Look back exercise
• Contaminated Blood Bill ( re-introduced to House of Lords 26th May 2010)
– Establish a committee to advise on haemophilia; – to make provision in relation to blood donations; – to establish a scheme for NHS Compensation Cards– to make provision for the financial compensation of people treated with and infected by
contaminated blood and blood products and their widows, dependants and carers– to establish a review of the support available for people who have been treated with and
infected by contaminated blood or blood products; and for connected purposes.
‘Compensation’ schemes to date
• Differentiation between those infected by HIV and HCV • HIV
– Macfarlane Trust • £20k lump sum + lump sum dependant on circumstance up to £62,500• Annual payments of £ 12,800 p.a. From Apr 2009• Established at a time when patients expected to die within a couple of years
– Eileen Trust • up to £60,000 p.a. dependant on circumstance
• HCV– Skipton Fund
• 2 stage payments ( £20 k and £25k subject to extent of liver damage)• No on-going financial support• Arbritary cut off dates
• Widows and dependant children largely ignored• Parents ignored
Legal Actions
• Judicial Review into Government response to Archer Report
• Formal Government response due by 21st September 2010
• Funding secured for exploratory work into legal action on vCJD exposure in
haemophiliacs.
• Further legal actions and Judicial Reviews remain options
• New information becoming available on other pathogens which could lead to
further legal actions ( Hep G , Parvovirus, Cryoglobulin, XMRV, PTSD......... )
• On going prosecution in Scotland
• ( Penrose Inquiry)
Widespread Political Support for Compensation
David Cameron – June 2009
Baroness Ruth Rendell – Jan 2010 2009
“The moral question for compensation the Society puts forward is unanswerable - as is the case for equal treatment for those with hepatitis C and those with HIV” - Norman Lamb MP Lib –Dem - 18th December 2009
Personal StoriesA daughter’s story
A wife’s story
•Mild Haemophiliac•Married, two children•Hepatits C via NHS Factor VIII given as a child•No discussion, no debate on change in treatment to Factor VIII•Two liver transplants – no future transplants•Cancer•MRSA, C.Diff•Exposure to vCJD•Worked in a senior international role for major FMCG company•Retired on the grounds of ill health Dec 2009•Huge financial impact of loss of job – conservatively estimated at £2.2M
•NO on-going financial support of any kind
•Life turned upside down
A patient’s story