In the 1970s and 1980s, a proportion of blood products supplied to patients by the NHS was contaminated with HIV or hepatitis C.
Around 4,670 patients with haemophilia, a blood clotting disorder, were infected; over 2,000 have since died in the UK, with 70 in Wales, from the effects of these viruses.
Successive UK governments have since refused to hold a public inquiry into these events.
The 2009 independent inquiry under Lord Archer made strong recommendations to Government, some of which have been implemented.
In 2008 the Scottish Government set up a public inquiry under Lord Penrose.
Following publication of the Final Report of the Penrose Inquiry in March 2015, David Cameron apologised for the Contamination Disaster and promised to improve financial support.
Nicola Sturgeon also apologised and - following a full consultation with those affected - announced a new Scottish scheme focusing on those in most need.
The Scottish scheme:
- offers improved payments to those with more advanced HIV and Hepatitis C;
- addresses those in most urgent financial need;
- AND, for the first time, widows there are entitled to regular payments and will no longer be forced to apply for means tested discretionary support – offering some security via annual payments of approximately £20,000.
In England, widows will only have a one off payment of £10,000.
Currently, the UK Government provides partial support to some individuals and families through various charitable trusts funded by the Department of Health.
Following a 2016 consultation, the UK Government announced a support package of £125 million to improve support for victims in England, with devolved administrations taking responsibility for future schemes and payments.
In October 2016 the Cabinet Secretary for Health, Wellbeing and Sport here announced “as an interim measure, payments for the remainder of the 2016-17 financial year will be at the same levels as England” – adding:
“However those affected may have ideas about how this money can best be used to assist them in everyday living and planning for the future. To inform our future arrangements, I am now seeking further views on a new scheme from April 2017”.
The Irish Republic’s scheme is widely heralded by victims as the best model, offering a choice of a one off payment or ongoing payments, life assurance and mortgage protection, and a Health amendment card which ensures access to treatment and support.
Referring to “this absolutely tragic situation for all involved”, Cruse Bereavement Care told me:
“People have been living with this for 30-40 years.
“Given the stigma around blood disorders, family members have to deal with the reactions that come with it.
“In some cases this manifests itself in a sense of needing to feel justified and to have pain recognised - privately as well as publicly.
“Broadly, when Cruse is able to offer bereavement support, we find that the bereaved experience is that there can be more unanswered questions for longer, which can have a profound effect upon people who have been bereaved.
“Unfortunately we also see this in suicides or cases when suicide or foul play is suspected, but the family/friends are never entirely sure.
“The unknown element can be caustic and can result in people entering into cyclical thinking about what might have or actually happened.
Our past is important to us, and that this gives us some of our identity. With significant unknowns present such as this, it can leave people feeling unstuck”.
Let me briefly quote Monica Summers, whose husband, Paul, a contaminated blood bank victim, died on the 16th December 2008 aged 44. Their daughter was 5 years old.
Monica says “Every day for 18 months she asked ‘when is daddy coming home?’ She turned 13 years in October and we both struggle.
My husband didn’t have a choice, it was made for him and he lost his life because of decisions taken by others. Yet over 30 years later we are still trying to get some agreement.
Please let the next decisions be made by voices of people who are currently suffering with HIV and Hepatitis C, by the widows and families left behind trying to heal and build a new normal life”.
Contaminated blood has had – and continues to have – a devastating impact on the lives of thousands of people with haemophilia and their families.
Those infected live with the health effects of viruses, with more deaths each year.
As Haemophilia Wales states:
“A Public Inquiry is the only way forward to get to the truth about the State’s mishandling of these events”.