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NHS Contaminated Blood Debacle ? Anyone Affected ? Inquiry Now Underway , Expected To Take 3 Years. - Carers UK Forum

NHS Contaminated Blood Debacle ? Anyone Affected ? Inquiry Now Underway , Expected To Take 3 Years.

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If so , I'll add to this thread.

Already . the revelations don't make good reading ... the usual " Run for cover " and " Cover up " accusations prevail.

If not , I'll ask the Greens to close it on ... say , 9 October ... should achieve 50 reads by then ... 14 days ?

Given the circustances ... sensitivity ... if you prefer ... pm me if you have a view one way or the other.

My blinkers will be on ... articles from the media , probably mostly from the Guardian.

Perhaps even The Eye ... who tend to go a little deeper ... thankfully.
Another thread bites the dust ?

91 took the trouble to read ... NO comments !

Reopened for business ... thanks to The Eye :

Loan wolves

Tainted blood, Issue 1490.


SOME haemophiliac victims of the contaminated blood scandal of the 1970s and 1980s are in deep hock to the very charities set up to offer them help and financial support, it has emerged.

Some are effectively trapped in their own homes – unable to move or do what they want with them – because of charges placed on their properties many years ago by the Macfarlane Trust (MFT), but now in the hands of the Terrence Higgins Trust.

The Macfarlane Trust was set up in 1988 to help the 1,250 haemophiliacs who were infected with HIV from cheap NHS imported blood-clotting products. (Only around 250 are still alive.) As Eye readers know, another 3,750 haemophiliacs were subsequently found to be infected with another deadly virus, Hep C.

The MFT offered practical support, made ex gratia monthly payments and handed out emergency grants for those in need. But it has now emerged that the charity sometimes refused to grant requests, instead offering loans or entering into equity deals with sick or often desperate recipients, who were unlikely ever to be able to repay them – something its own solicitors in 1998 suggested might be unlawful.

One such recipient was Clair Walton, who had asked MFT in 1989 for an increase in her monthly payments to make ends meet when her young haemophiliac husband, Bryan, was dying. Instead, the MFT paid off a £50,000 chunk of the couple’s mortgage in return for a share in their property.

Cynical memo

Clair was clearly very vulnerable, having also been diagnosed with HIV after being infected by her husband. She has not been able to obtain the original MFT documentation, but has unearthed a cynical internal MFT memo about the arrangement, stating that the trust was more “likely to regain capital in the shorter term” because both husband and wife were infected and “there are no children”. She told the Eye: “We were a young couple who had just had our world destroyed, losing our health, the chance to have a family – and we were being used to create a profit for the MFT.”

Similarly, another Macfarlane “beneficiary”, “Adrian”, now aged 54, was given a £10,000 loan for much-needed home improvements when he had been told – and believed – that he was “dying from Aids”. With advances in treatment both Clair and Adrian have survived, but so have their liabilities.

Because MFT’s “loan register” was lost, it is unclear how many similar deals were entered into. It is known that some were written off; but despite the intervention of MPs and campaigners the MFT has consistently refused to “right the wrong” in 11 cases. When Clair asked for the charge on her property to be removed, she was accused by MFT of “wanting her cake and eating it”.

‘Gift of deed’

It had been hoped the slate would finally be wiped clean when the MFT was wound up last year along with four similar charities, when the government streamlined payments to contaminated blood victims under the new England Infected Blood Support Scheme (EIBSS).

But no. Despite the MFT apparently distributing £435,000 in new grants from its reserves to some HIV survivors earlier last year, the Eye has been told that loans and charges – as well as £800,000 – were passed under a “gift of deed” to the Terrence Higgins Trust. The charity has wasted no time in registering its interest in the properties.

The Terrence Higgins Trust declined to answer questions from the Eye and instead issued a statement from its chief executive, Ian Green. He said: “We are aware of the concerns around loans and our trustees will be considering a robust process for reviewing these.” He added the charity would be “embarking on a process of engagement with Macfarlane beneficiaries” and would not want to pre-empt the best course of action.

Sir Brian Langstaff, who chairs the long overdue public inquiry into the infected blood scandal, has already written to the government after only a few preliminary hearings urging it to take “decisive action at the earliest opportunity” over financial support to victims and families. In other words, it should not wait for the conclusion of his inquiry, which could take years.

Last month, Eye 1487 highlighted how a widow was left literally penniless when the £18,000-a-year support money paid to her sick husband ended with his death, and she could not access a one-off widow’s grant. Sir Brian’s pleas clearly fell on deaf ears.
Those left behind by the contaminated blood scandal shouldn’t have to fight for support.

My husband was a victim of the contaminated blood scandal. His death started my Kafkaesque battle with bureaucracy.

My husband, Steve Dymond, was a mild haemophiliac and a victim of the contaminated blood scandal. He was a funny, clever, gentle man for whom tributes have not ceased, since he finally died in late December, aged 62. In the 1970s he was infected with hepatitis C after being given contaminated blood products on the NHS – 4,800 British haemophiliacs were infected with the product at the time and many have subsequently died.

When I kissed his cheek for the last time and then stepped out into that lonely night, I had no idea what was awaiting me.

Steve and I received an income from the English Infected Blood Support Scheme (EIBSS), which provides financial support to people who were infected with multiple viruses, including hepatitis C and HIV, from NHS-provided blood products – it is there to support families and partners after the death of someone infected. This scheme was the result of David Cameron’s promise, as prime minister in 2015, of financial support for people affected by the contaminated blood scandal.

It has been estimated the financial losses to Steve and me stemming from his hepatitis infection amounted to several million pounds.

When I became newly widowed, I was entitled to a £10,000 widow’s payment – I would have been satisfied with this. It would have helped to provide some kind of security as I started life on my own again after 44 years.

In January I made my first approach to the EIBSS. I was told they would discontinue Steve’s quarterly payments immediately – but until I could produce a death certificate, they could not begin to assess my own widow’s claim. I was faced with a bizarre, Kafkaesque situation where the support scheme was happy to cease my husband’s payments without seeing a death certificate – but at the same time they were unwilling to release my widow’s payment until they did see the same certificate!

Not having a death certificate, as I must wait for the coroner’s inquest in May, has caused all manner of administrative problems. The process with the EIBSS has reduced me to tears.

When I asked how I could provide for myself in the interim, I was told to go to my local Citizens Advice centre and see what benefits I might be entitled to.

It was a grey, wet afternoon when I heard this. I’d been widowed less than a fortnight. The nearest Citizens Advice was in another town. Steve always called it “perverse resilience” – that tiny inner spark that refuses to give up, however hopeless things seem. Mine held out with plenty of help from friends. I kept going.

TaintedBlood (TB) is the principal pressure group for haemophiliac families victims of the contaminated blood scandal – Steve and I both campaigned for the organisation for many years. It has a collective ethos, foregrounding both intellectual rigour and family in its work. It was the support of my TB family that gave me the means to fight a new battle, after Steve was gone, to gain what minimal support the authorities deemed I should be given.

I agreed to my current experience being used by the TB campaign to highlight the position of the newly bereaved – I am not the only one facing such difficulties. The result was totally unexpected: a GoFundMe page was launched (something I didn’t know even existed), which has kept me financially afloat.

The battle with the EIBSS took eight weeks before I got a partial payment. The hardest part became the impossibility of getting coherent responses and action from them: I was told Steve’s last quarterly payment would be made into his account (to which I had no access).

I was told I would be sent the application forms for my own payments – but they never arrived. A team leader delegated to assist me sent me the wrong forms. I found myself having to complete demeaning forms with questions such as: “How would you benefit from this money?”

The TB campaign was able to bring my plight to the attention of supportive MPs and the government minister responsible.

Eventually I was told by the EIBSS that my situation had been sorted and that further payments could be made immediately. The rest of the £10,000 owed to me has now finally arrived – enabling me to begin to get on with my life. But I can’t help but feel this was only eventually sorted because I made my fight public: how many other bereaved families are also caught in this administrative nightmare?

It should have come as a relief – but in some ways it didn’t. The payment merely provided confirmation that Steve really was never coming back; that I’d won my battle for financial support was no real consolation.

In response to my story a spokesperson for the NHSBSA said that they had given me a direct line to a team manager to help with my application, fast-tracked payments once information was received and had taken steps to ensure the safe arrival of forms.

They added: “The payment of the £10,000 lump sum can be delayed because evidence is needed to show the infection was related to the cause of death and an application form for the lump sum payment for bereaved spouses/partners needs to be completed ... Our role is to support beneficiaries and we ensure that people have help as quickly as possible, including same day payments once we have the correct information.”

I can only now hope that payments to other bereaved family members are met by the government – without the sorts of difficulties I faced. What happened to me cannot happen to anyone else again. And when the findings of the infected blood inquiry are eventually made, perhaps we can truly find out why we were put through this ordeal for 40 years.

• Su Gorman is the widow of Steve Dymond, who was infected with hepatitis C in the contaminated blood scandal.
Infected blood victims call for more mass screening for hepatitis C

Government urged to test NHS patients given blood products or transfusions in 1970s-90s

Victims of the NHS contaminated blood scandal have called on the government to extend mass screening for hepatitis C infections to prevent more deaths.

The plea came as the prime minister, Theresa May, pledged additional financial support for those infected as well as bereaved relatives affected by the medical disaster.

The total annual payments for those infected will increase from a £46m to £75m a year, the Department of Health announced.

“The contaminated blood scandal was a tragedy that should never have happened and has caused unimaginable pain and hurt for victims and their families for decades,” May said.

“The start of the inquiry today is a significant moment for those who have suffered so much for so long, as well as for those who campaigned and fought so hard to make it happen.

“I know this will be a difficult time for victims and their families – but today will begin a journey which will be dedicated to getting to the truth of what happened and in delivering justice to everyone involved.”

In the run-up to the public inquiry into the medical disaster that has killed thousands of people, lawyers and patients’ groups have pressed the health service for public awareness programmes and testing of all those given blood products or transfusions during the 1970s, 80s and 90s.

The infected blood inquiry will begin hearing individuals’ testimonies in London on Tuesday before hearing witnesses in Belfast, Leeds, Edinburgh and Cardiff over the coming months. The inquiry is expected to take up to three years.

It will investigate why so many patients, many with haemophilia who needed regular treatment, were given blood plasma from the US contaminated with HIV, hepatitis C and other viruses. Many of the products derived from blood donated by prisoners and drug addicts who were paid.

More than 25,000 people may have been infected, Sir Brian Langstaff, a former high court judge and chair of the inquiry, told a preliminary hearing last autumn. Medical records have gone missing and government documents destroyed, raising questions about whether there were attempts to evade responsibility.

Nearly 3,000 people have died as a result of the contamination, and patient support groups estimate victims are still dying at the rate of one every four days. Half of those with haemophilia who were infected have now died.

Young women were unknowingly infected by their husbands. Women needing transfusions after childbirth and patients who needed blood after surgery also picked up lethal viruses. In one case a boy who went to the dentist and ended up needing a blood transfusion was infected.

The inquiry will start at Fleetbank House, off Fleet Street in central London. Hearings will run from Tuesday to Friday every week and will be broadcast live online. There is expected to be about 2,500 witness statements, with health department staff, NHS officials and politicians likely to be questioned in the later stages.

The two main groups of victims are haemophilia patients who were given plasma or factor 8 products derived from many donors, and other patients who were given transfusions normally from a single donor. About 90% of haemophiliacs were infected; the infection for those receiving transfusions was closer to 1%.

The hepatitis C virus, or HCV as it is also known, was not formally identified until 1989 by scientists in California. Before then it was called non-A, non B viral hepatitis. The damage it inflicts on the liver does not usually show in the initial stages of infection.

Clive Smith, the chair of trustees at the Haemophilia Society, said: “There was no test for hepatitis C until 1991, and there were often no symptoms until the liver began to fail, so many people were not aware they were infected.

“The only recommendation from the Penrose report was for a ‘look back’ screening programme for anyone believed to be at risk of infection from that period, but it was not followed up. There’s never really been a justification for not doing it.

“It’s not unusual for our members to tell us that they were tested for HIV without their knowledge, without their consent and were not informed of the results. This scandal has torn apart thousands of lives. We hope the inquiry will finally expose the truth about why this happened and hold those responsible to account.”

Gene Matthews, a partner at the law firm Leigh Day, which represents about 300 victims, said: “It is estimated many thousands of people remain unaware of the fact that they are suffering as a result of HCV which they received as a result of contaminated blood provided in the 1970s, 1980s and early 1990s. There are also families who lost loved ones from the virus after they became infected during this period of time.

“We have people coming to us who have ben diagnosed very recently. We urge the Department of Health to help people identify whether they have the virus, especially as new treatments, which have become more widely available during the past few years, are very effective and have a 90% success rate in clearing the virus from the body.”

Des Collins of Collins Solicitors, which represents more than 1,000 victims, said look back testing was not seen as the primary focus of the inquiry, but it was important.

“It hasn’t been done and it should have been done,” he said. “This is the worst UK peace-time tragedy. The nightmare continues for so many people whether infected by hepatitis C and/or HIV/Aids – as well as for the friends, families and loved ones of the many hundreds of people who have died.

“[People need answers about] how and why they received infected treatments produced by the Department of Health and commercial pharmaceutical companies, the details of the extensive cover-up that followed, and – very importantly – what the government proposes to do about it.”

Jasons Evans, founder of the independent haemophilia group Factor 8, said there had been some look back screenings conducted by the Department of Health in 1995. He questioned whether the widelky circulated figure of 28,000 potential victims was accurate, suggesting it was more like 6,000 people who had been infected.

The Department of Health and Social Care declined to explain why it has not carried out extensive and more recent look back tests. A spokesperson said: “The infected blood scandal was a tragedy that should never have happened, and the ongoing public inquiry was set up to get to the truth and give families the answers they deserve. We are following the inquiry closely and will continue to cooperate fully.”
Hearings started and about time too!
.... and there's me thinking ... " Oh no , not another zombie thread ! "


No Chris, not a zombie thread but if you aren't impacted it's only in your peripheral view. This subject is above the background noise for me since i was once briefly employed by a company who manufacturers these products, and others, in America: https://www.cbsnews.com/news/bayer-admi ... n-english/
8 months for anyone to reply to the first posting ?

So many threads are suffering from the same fate.

The essence of any forum is ... interaction.

Green Paper thread ... will determine the lives of many carers for a generation ... a classic example.

A point I continually make to the forum's landlord ... CUK ... and their indifference to both the forum ... and us.