Those left behind by the contaminated blood scandal shouldn’t have to fight for support

https://www.theguardian.com/commentisfree/2019/apr/16/bereaved-victim-contaminated-blood-scandal-death

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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.

Why was contaminated blood allowed to devastate haemophiliacs’ lives? | Su Gorman

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.

Steve Dymond obituary

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