She Is 75, Seriously Ill and Needs 24-Hour Care. Her Family Says They Were Told to Wait

By The Unheard Voice

Susan Burke and her family say she was infected following a blood transfusion in 1981, when she was 30. What happened changed the course of Susan’s life—and the lives of everyone around her.

Susan received her core compensation last year. Her son, Ian Burke, managed the claim on her behalf.

At the conclusion of that process, the family says it was told to contact the claims team immediately if Susan’s health deteriorated.

This year, it did.

Susan, who turns 75 this year, is now living with liver, kidney and heart failure. She requires care 24 hours a day.

Ian contacted Susan’s claims manager and the Infected Blood Compensation Authority to report the serious change in her condition.

He believed that following the instruction to report any deterioration would lead to Susan’s changing circumstances being considered urgently.

Instead, Ian says the family was told that nothing could be fast-tracked and that it would be contacted “as and when.”

For Ian, this is not simply an administrative delay.

He has given up his job to become his mother’s full-time carer. He now has no employment income while also trying to support his wife and two children.

The family says it is struggling financially at the very moment Susan needs its support most.

Ian describes his mother as a fighter.

“She’s a fighter. Every time she gets knocked down, she fights to get going again, and all the family help in different ways.”

Susan’s infection did not affect her alone.

Throughout the 1980s and 1990s, the family lived in Shropshire while Susan received hospital treatment in London.

Ian recalls his father working until 6pm, travelling to London in the evenings to be with Susan and then returning so he could work again the following morning.

Relatives stepped in to care for the children. At different times, friends and even members of their father’s employer’s family reportedly helped look after them, giving their aunt and grandmother a much-needed break.

One of Ian’s sisters, who wishes to remain anonymous, recalls that the strain was carried by the whole family—not only by their father.

The children were sometimes placed in the care of friends and relatives while Susan received treatment. Her sister remembers the consequences as medical for their mother, but mental and financial for their father and children.

Christmas became particularly important because it was often the only time Susan was home and the whole family could be together.

Their father carried the practical, emotional and financial pressures created by Susan’s illness for decades. He died suddenly in 2007.

The family believes his contribution and suffering have not been properly recognised. It wants an explanation of what, if anything, his estate may be entitled to claim under the compensation arrangements.

Ian has fought for recognition for his mother and his family for years.

He is now asking why a woman approaching 75, experiencing serious deterioration and requiring constant care, must remain in an ordinary queue.

What was the purpose of telling the family to report a deterioration immediately if that report would not lead to an urgent review?

What is a carer expected to live on after giving up work to provide the round-the-clock support an elderly and seriously ill parent needs?

And how are families supposed to obtain recognition for relatives who carried an enormous burden but died before the current compensation process began?

Susan’s story shows why infected blood compensation cannot be treated as a single transaction completed when a core award is paid.

Health can deteriorate. Care needs can become urgent. Families who have already sacrificed decades of their lives can suddenly find themselves carrying an even greater burden—with no income, no certainty and no clear timetable.

The family followed the instruction it says it was given. It reported Susan’s deterioration.

It should now receive a clear explanation of what happens next and whether Susan’s circumstances can be reviewed urgently.

Susan and her family have lived with the consequences of what happened in 1981 for more than four decades.

At nearly 75, with liver, kidney and heart failure and a need for 24-hour care, Susan should not have to fight simply to have the urgency of her circumstances recognised.

The Unheard Voice is approaching IBCA for a response. We are asking whether Susan’s deteriorating health and urgent care needs can be reviewed without further delay, what provision exists for families facing comparable circumstances, and what recognition may be available in relation to Ian’s late father.

Any response received will be added to this article.

— The Unheard Voice