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Whistleblowers 11: the Haemophilia Society

The Haemophilia Society calls for an enquiry into its own failure and that of government, pharma and clinicians

Medics and politicians knew by the mid-1970s that commercially manufactured blood products from the USA were suspect. By the mid-1980s there were warnings of a similar situation in respect of HIV. Nevertheless these products continued to be imported and used.

British haemophiliacs and other victims’ lives were blighted in the 1970s and 1980s by these cheap imported US blood products, harvested from inmates and drug addicts. More than 5,000 were infected and went on to unknowingly infect family and friends.

In 2010 this site recorded the efforts of Lord Alf Morris, fighting for better treatment of patients infected with contaminated blood products for years. It was noted that eight years ago the Lancet reported the Irish parliament’s generous compensation package for haemophiliacs infected by contaminated blood products.

The British government has not treated victims well. Many of the relevant records have disappeared. Former Health Secretary Patrick Jenkin and former Health Minister David Owen both searched the departmental archives, but were told that the documents had been accidentally destroyed.

Of the 1,200 who contracted HIV, barely 200 survive. They have fought tirelessly for safe products and proper compensation for the avoidable infections which have devastated their health, turned family members into full-time carers, and left many living in poverty.

In March a statement by the Board of Trustees of the Haemophilia Society on contaminated blood opened: 

Failures in government policy and negligence of public bodies led to people being infected with blood borne viruses as a result of their treatment with blood products in the 70s and 80s. The impact of these failures was worsened by poor communication from government, healthcare professionals, pharmaceuticals companies and The Haemophilia Society. Warnings were not heeded and errors were subsequently hidden.

Pharmaceutical companies and clinicians did not share, or even hid, information about risks from patients and patient groups. Blood products, for the treatment of bleeding disorders, were made from pooled human plasma which was known to allow the transfer of viruses. Blood donations, particularly in the USA, were taken from high risk paid donors, often in prisons and without adequate processes to screen potential donors.

We condemn the actions and inactions of all parties that contributed to dangerous products not being withdrawn, patients not being properly informed of risks and technological and procedural advances ignored.

The additional funding announced last year to more than double the budget for contaminated blood support has not gone to those most in need and will ultimately leave many people with less support. Other affected groups such as bereaved parents, partners and other family members have been particularly under-supported and ignored.

We do not think the current settlement is sufficient to provide the support people need and deserve. It does not allow them to have a reasonable standard of living rather than just be removed from poverty. We reject the current proposals for reform of the support arrangements in England as they do not recognise the full needs of the bleeding disorder community, were poorly conceived and consulted on, do not provide sufficient support to people covered by the scheme and still exclude some individuals entirely.

We want a full public inquiry under the inquiries act as only this could compel witnesses and would shed light on concerns such as:

* the inappropriate use of known infected treatments on previously untreated patients

* why and how British self-sufficiency in blood products was never achieved

* why tests to identify infected blood donations were not implemented sooner

* when and to what extent the UKHCDO, The Haemophilia Society, the Department of Health and the NHS held and were aware of information on risks and tests for infection with blood borne viruses

* why potential methods to heat treat blood products were not fully investigated and implemented sooner.

To facilitate this we want a full and open disclosure of all information held by the Government, or elsewhere, relating to the sourcing, manufacture, procurement, licensing and NHS treatment with contaminated blood and blood products. However, an inquiry must not distract from or delay the implementation of an improved support scheme.

The statement continues here:

http://haemophilia.org.uk/wp-content/uploads/2017/03/Board-Statement-on-Contaminated-Blood-March-2017-1.pdf

Following the statement see the APPG meeting minutes 29 March 2017 final.

http://haemophilia.org.uk/wp-content/uploads/2017/04/APPG-meeting-minutes-29-March-2017-final.pdf

 

 

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The Secret State – 9: gagging whistleblowers

whistleblowers 3As noted earlier, a growing number of whistleblowers are coming from many quarters including hospitals, police stations, the military, nuclear and pharmaceutical industries, to reveal information about ‘covered up’ dangers or other misdeeds deliberately withheld from the public.

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But despite the so-called Whistleblowers Act – the Public Disclosure Act – these people are being victimised  or ‘gagged’ and for years the Department of Health and the Treasury have withheld information about the full extent and cost of this practice.

gary walker whistleblowerBBC News reports that Gary Walker, a health service manager, signed an agreement linked to a confidentiality clause in April 2011. This, he claimed, prevented him from speaking out about his dismissal and his concerns over patient safety. He has now decided to break the gag – the first former NHS employee to do so.

MP Steve Barclay, a member of the public accounts committee, spent two years obtaining the information that in three years there were 598 ‘special severance payments’, almost all of which carried confidentiality clauses aimed at silencing whistleblowers, costing the taxpayer £14.7million.

The Department of Health and the Treasury, which was sent the information by the relevant NHS bodies, refused to publish the costs until Mr Barclay tabled a series of parliamentary questions.

Advice from Dr David Nicholl (repeated)

Never blow the whistle alone (check with colleagues that you have your facts right) go up the chain of command first (your medical director, chief executive etc).

If they don’t reply or fob you off, write to them again- this time get a letter signed by your colleagues in your department – and – if the problem is still ongoing and is risking patients, and you haven’t had a proper reply following the above, you are duty bound to go to the press in my view.

Make sure you are 100% sure of your facts, would you be prepared to swear on oath in court that your evidence is correct? Whingeing is one thing, but being sued for libel doesn’t do anyone, least of all your bank balance any favours.