On June 30 (one of the hottest days of the year), haemophiliacs walked, limped and wheeled themselves from Trafalgar Square to Westminster with an admirable determination to fight for their cause. Campaigners took to the campaign trail to highlight the plight of those infected with HIV and hepatitis C (HCV) through NHS blood products in what Lord Winston described as “the worst medical treatment disaster in the history of the NHS”.

Though numbers were small as 2,000 of the 4,500 infected have already died, it was in fact the most well attended lobby for years. Campaigners demonstrated a renewed vigour and the talents of this group were visible in the t-shirts, ribbons, posters, photos and films produced by haemophiliacs and friends such as Adrian Goodyear, Hassan Effe Hussein, Glenn Wilkinson and Richard Warwick; who all reflected the spirit of the event.  

Note: The t-shirts caused quite a stir and were actually banned in parliament, now the subject of a question raised by MP Diana Johnson…

The day was organised by the Contaminated Blood Campaign Coalition (CBCC) which represents all those with bleeding disorders and their relatives infected and affected with blood born viruses; an initiative supported by the national Haemophilia Society.  

"Activists want urgent government action - not just the usual line of sympathy which does not pay the bills of grieving widows."

Family and friends were in attendance too; a busload of the relatives of recently deceased Leigh David Sugar arrived from Wales to tell their story, and disability campaigner Carla Woods braved recent illness herself to stand by the haemophilia community in a display of strength and unity.

Campaigners dispute the government’s claim that haemophiliacs were “inadvertently” infected as no government public inquiry has ever been held and the remit of the privately funded inquiry led by Lord Archer of Sandwell did not include finding liability. Haemophiliacs welcome the recommendations of Lord Archer and are lobbying to ensure that the Coalition Government implement these without further delay…

In 1996 my late husband Pete and I set up a national campaign initiative calling for haemophiliacs to be compensated on a level with Ireland - where payments were far higher to reflect loss and financial need. Lord Archer accepted this argument, now recommendation 6 (h), and I stress that the economic state of the country should not be a barrier to justice. As far back as 2004 I was able to show that the situation in Ireland was no different to the UK and fellow campaigner Colette Wintle and I provided letters from the Irish government and lawyers stating that Ireland paid out on the grounds of “extraordinary suffering” with no legal liability. The UK government had previously argued that the case in the UK was different. However in a recent judicial review won against the Secretary of State for Health, Justice Holman ruled that the government approach to recommendation 6 (h) “has been and remains infected with error”.

Campaigners were determined to get this message across to David Cameron delivering letters to No 10 and lobbing their MPs to support the Contaminated Blood Bill introduced by Lord Morris of Manchester Haemophiliacs detailed their concerns and requested that politicians honour their pre-election commitments to our community.

Activists want urgent government action - not just the usual line of sympathy which does not pay the bills of grieving widows. A constituent of the Prime Minister, David Leadbetter, did manage to secure a meeting with him this week so let’s hope the PM is now listening…

The wheels of justice turn slowly but one positive step forward on the day was a meeting between elected members of the CBCC and the Department of Health; where we were able to re-establish a constructive dialogue to share information about the Tribunal scheme in Ireland and the need for lump sum compensation payments to – in order to avoid the ongoing humiliation of going cap in hand to beg for small grants from government Trusts. Haemophiliacs have lost so much in life and are determined to preserve their dignity after all they have suffered.

CBCC Chairperson Dave Tonkin stated that:
“The government has misled the haemophilia community for many years and we hope the forthcoming release of papers belonging to former Health Minister Kenneth Clarke will shed new light on government thinking. The government must now start to negotiate directly with campaigners on the recommendations of Lord Archer as haemophiliacs are not going away.”

Words: Carol Grayson
Photo links: Please click here and here.

For more information, check our Ellee Seymour’s political blog on haemophilia issues, and Alex Terrell’s blog on contaminated blood.