Thursday, 26 January 2017

Tainted Blood

(Pic : ITV)

The latest member's debate covers what was once described by Prof. Robert Winston as one of the worst disasters in NHS history.

I'm also going to take the opportunity to play around with the format a bit.

The Issue

Haemophilia is a condition where blood can't clot due to the absence of blood proteins (Factor VIII or Factor IX). If a haemophiliac suffers an injury that results in bleeding - no matter how minor - they could potentially bleed to death. As a result, haemophiliacs require regular infusions of concentrated blood plasma as treatment.

During the 1970s and 1980s, the UK had a shortage of Factor VIII and imported it from American suppliers. They were obtained and manufactured via mass blood plasma donations from US prisoners (a population with high drug use rates) and paid donors (often from poor urban areas). The plasma was then concentrated. If one person carried a blood-borne disease, it would infect the whole batch.

The batches weren't properly screened as AIDS was still emerging as a public health issue and had no adequate test. As a result, around 4,700 haemophiliacs and 170 non-haemophiliacs in the UK (273 in Wales and many thousands more around the world) were infected with hepatitis C and/or HIV.

To date, the UK Government, pharmaceutical companies and health authorities have denied liability for the scandal, though limited ex gratia (morally obligated, rather than legally obligated) compensation payments are available.

The Motion

The Senedd:

  • Calls on the UK Government to hold a public inquiry into the contaminated blood scandal.
  • Notes that 70 people in Wales have died from hepatitis C and AIDS as a result of contaminated blood.
  • Notes a UK Government apology dated March 2015, but also acknowledges that affected families have never received full answers and are still campaigning for justice.

Key Points

Julie Morgan AM (Lab, Cardiff North):

  • She paid tribute to Lynne Kelly and Haemophilia Wales for calling for the inquiry and securing payments.
  • A public inquiry would be "a quest for the truth", particularly answering why/how contaminated blood was used after the contamination became known?
  • The 2009 Archer Report wasn't a full public inquiry; it didn't have power to compel anyone to give evidence, while the UK Department of Health declined to provide witnesses. Relevant ministerial papers were also destroyed under the "10 year rule".

Mark Isherwood AM (Con, North Wales):

  • A £125million UK Government support package was provided for English patients in 2016; the devolved administrations are responsible for their own schemes.
  • The Scottish Government launched their own inquiry in 2008 (Penrose Inquiry). This led to a formal apology and improvements in financial support.
  • The Republic of Ireland's scheme offers a customisable packages of support - including life insurance and mortgage protection - and is seen as an ideal model to follow.

Hefin David AM (Lab, Caerphilly):

  • A male constituent was infected with hepatitis C when they received blood treatment aged 2, subsequently developing cirrhosis. He lost  disability and housing benefits, and feels "penalised" for doing his best to stay in work.
  • Another affected constituent suffered discrimination for contracting AIDS due to the stigma about the disease.
  • It's a "grave injustice", not a party political issue and an inquiry has to happen UK-wide as it occurred across the whole of the UK and pre-dates devolution.
  • He urged the Health Secretary to listen to the stories and views of people affected when preparing a new support scheme.

Dai Lloyd AM (Plaid, South Wales West):

  • No UK government has become self-sufficient in blood products, despite promises to do so dating back to 1945.
  • Hepatitis C is no "minor infection". It's a "lifelong penury" that results extreme fatigue, leaving people unfit for work and ineligible for both life insurance and mortgage protection.
  • He held a short debate on contaminated blood in March 2001, taking evidence from people who've subsequently died. Nothing's changed for people on the ground. The debate is "infuriatingly" the same.

David Rees AM (Lab, Aberavon):

  • The scandal is a result of commercial interests being favoured to the cost of public safety; UK Government was too slow to react.
  • Following the death of a father in his constituency - who was given contaminated blood - the sons were taken into care and separated, then subjected to blood tests to ensure they weren't infected. They weren't reunited for 20 years.
  • We should support the families and children of people who've died – not just the individuals affected. Nobody should have to beg to receive the support they need.

Caroline Jones AM (UKIP, South Wales West):

  • We need a full, independent public inquiry on the use of blood and blood products in the Welsh NHS. "Have we learnt anything? Can we be sure this won't happen again?"
  • The Scottish inquiry recommended everyone who received a blood transfusion before September 1991 be tested for hepatitis C. That's the purpose of such inquiries, to establish facts and make recommendations.

Vikki Howells AM (Lab, Cynon Valley):

  • One haemophiliac constituent was told by his doctor he had HIV aged 17, then told he had 18 months to live. He became addicted to sleeping tablets, was admitted to psychiatric hospital and attempted suicide several times. He's been refused ongoing payments despite developing hepatitis C and cirrhosis.
  • Another constituent's wife died of liver cancer in 2014 having contracted hepatitis C after receiving treatment for a blood disorder. "Nobody is taking any responsibility".

John Griffiths AM (Lab, Newport East):

  • A haemophiliac constituent contracted HIV and died of AIDS aged 49. He couldn't get life insurance, so his widow was left to deal with the fallout. The UK Government should ensure financial security for survivors and was said to have "lost the plot"; a one-off £10,000 payment is "insulting".

Welsh Government Response & Summing Up

Health Secretary, Vaughan Gething (Lab, Cardiff S. & Penarth):

  • The Health Secretary "strongly supports" a UK-wide public inquiry into contaminated blood supplied by the NHS, and was "truly sorry" for the harm caused and continues to cause people.
  • An inquiry can only take place if the UK Government acts because they have access to the information required for a meaningful inquiry.
  • "We've learnt from it"; blood product safety in Wales has significantly improved in traceability and other measures.
  • Three priorities for a Wales support scheme: it has to be equitable and transparent; it has to be affordable; it must take into account views of those affected. Some extra money has been allocated in the 2017-18 budget, though this won't satisfy everyone.

Rhun ap Iorwerth AM (Plaid, Ynys Môn):

  • The heart-wrenching experiences highlight why they're demanding action. Behind every name (displayed on the screens in the chamber) there's someone, and a family, who's suffered through no fault of their own.
  • A public inquiry doesn't/wouldn't negate the need for a fairer financial support/payment system.

The motion was agreed unanimously.


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