Special report: Contaminated blood victims have been let down in so many ways

Steve Sillett, contaminated blood victim, at home with wife Di (middle) and daughter-in-law Laura Rookyard. (Image: Archant Norfolk Photographic � 2015)

“It seems people have to go begging just to get anything from them,” said Laura Rookyard, from Rickinghall, the daughter-in-law of hep C sufferer Steve Sillett.

Just working out where to apply for financial support is a baffling experience.

There are five places from where people can receive support, each one tailored towards different groups of people and offering different levels of funding.

The process of applying can be a gruelling one.

Earlier this year an All-Party Parliamentary Group Inquiry was held to look at the funding provision for people affected by the contaminated blood scandal.

It raised a series of serious concerns, which included:

• Lack of ongoing payments for widows/widowers, leaving many living in poverty;

• Inconsistencies in handouts. All HIV patients receive regular payments, but only those with a certain stage of hep C do;

• A failure to provide for dependants in a household;

• Demeaning and onerous application process;

• Concerns over the future viability of some of the organisations due to a spike in claimants, but no increase in government funding;

• An insistence on hospital records from the 1970s and 1980s – even though many hospitals make it impossible to access them or have simply lost records;

• A lack of accountability from the trusts. More than half of all appeals one fund’s panel are overturned.

The group came up with a series of recommendations aimed at simplifying the process, expanding the financial support for all those with hep C and their families and ensuring the best treatment possible is made available.

Ipswich man Alan Burgess, one of around 1,500 haemophiliacs – most now dead – who were co-infected with HIV and hep C, has also criticised the system through which financial support offered to those infected, which he describes as “needlessly complicated”.

Mr Burgess received financial help through the MacFarlane Trust. However, he has highlighted other victims and their widows who have been required to provide a “myriad of proof” and been unable to do so because of missing records.

“Either way you have to go through a charity which is a big bug bear for a lot of people who want their dignity back,” he added.

Campaigners are fighting for a one-off lump sum to be given to all those infected with contaminated blood, as well as regular financial support.

Mr Sillett, of Brockdish, near Diss, said: “People have died and their families are having to survive on peanuts and begging just to keep going.”

A Norfolk man who contracted a devastating disease after being given contaminated blood by the NHS is now being denied a drug which could save his life.

Today, it has emerged that a breakthrough drug called Sofosbuvir is being denied, even though it was approved by drugs regulator NICE in January as a potentially effective drug to rid sufferers of hep C.

The refusal comes despite the fact that in a January House of Commons debate, MPs pledged to ensure ‘priority access to NHS treatment to those affected’ by the scandal.

The married father-of-five, who we have agreed to identify only as Simon, said the refusal had left him feeling ‘worthless’ and fearful for his future.

He said: “The NHS gave me this condition, surely it is their responsibility to help me get rid of it?”

The drug, which costs an estimated £45,000 for a 10-week course of tablets, was recommended following trials for certain types of chronic hep C. However, its planned roll-out, originally in April, has been delayed by NHS England until August.

An NHS England spokesman said: “We welcome the agreement from NICE to grant NHS England the time to allow formal clinical networks for hepatitis C to be established in order for people to have equal access to care. We will be publishing those plans in due course.

“NHS England has been operating an interim commissioning policy on these drugs while NICE has been considering its guidelines, ensuring that those in the greatest need have been able to access these treatments, and we made an additional £38m available in the last financial year to cure patients at risk of liver failure.”

For more than 30 years the victims of the contaminated blood scandal received no public apology for their treatment.

That was until earlier this year when David Cameron said: “It is difficult to imagine the feelings of unfairness that people must feel as a result of being infected by something like hepatitis C or HIV as a result of a totally unrelated treatment within the NHS, and to each and every one of those people I would like to say sorry on behalf of the Government for something that should not have happened.”

His apology came upon the conclusion of The Penrose Inquiry, the Scottish probe into Hepatitis C/HIV acquired infection from NHS treatment in their country. After six-years and an estimated £12m cost, it came up with just one recommendation – that anyone in Scotland who had a blood transfusion before 1991 should be tested for hepatitis C if they have not already done so – and led to devastated campaigners burning the report in front of the gathered media.

No such inquiry has been held in this country, something that irks many campaigners.

The stigma of HIV – particularly in the early 90s – had a devastating impact on Mr Burgess and his family.

Neighbours at their first home grew suspicious of why he was not working, but Mr Burgess felt unable to tell them why.

“They did not know where the money came from and I could not tell them,” he said.

“Our car had bricks through the window and our house was egged – the police took it so seriously they put surveillance cameras in the girls’ bedroom.”

The family moved home and chose to keep a low profile. His wife Denise said it was easier not to attempt making friends.

“Now we keep ourselves to ourselves,” she said. “We lost friends through it – it’s easier just not to bother.”

Campaigners also believe more education is needed, not only so the public and health sector understands their problems, but also to track down the thousands of victims that might still be out there.

In several countries, including France, Canada and Italy, contaminated blood scandals have ended up being played out in the courtroom.

In one, a former French health minister was convicted and jailed for knowingly using contaminated blood on patients.

No legal cases have ever been pursued in the country.

In the 2007 Lord Archer independent inquiry, Lord Owen, a Labour health official in the 1970s, said: “The more you look at this, the more you look at the question in France, the more you begin to see people who were fearful of a legal process going on in this country.

“The issues we were dealing with were extremely important and you suddenly find that during a 10-year role, ministerial papers can be pulped.”

Blood was very big business, it was a commodity, just like oil.

During the 1970s and 80s, advances in medical technology increased the need for blood product and blood donations, and companies in the United States in particular quickly found a way to make money from the shortage. But there was no regulation in place to monitor safe ways to extract blood.

Clinics were set up across the US and people were even paid to donate.

One Canadian company took blood from Russian corpses, while inmates at prisons were even paid to donate once or twice a week, again with no checks on whether they were carrying a disease.

The NHS, struggling to cope with the demand, continued to buy the products into the 80s and up to 1991, despite the fact evidence suggests they were aware of the dangers some 15 years earlier.

At a 1997 independent inquiry into the scandal, Lord Archer of Sandwell said: “By the mid-1970s it was known in medical and Government circles that blood products carried a danger of infection... but the products continued to be imported and used, often with tragic consequences.”

Tomorrow: How one victim and his family are fighting back.