Loving husband and father who was diagnosed with leukaemia in 1989 and infected with Hepatitis C through contaminated blood products was unable to recognise his own children after being ‘abandoned’  by the UK’s healthcare system

Bill Spellman was just 45 years old when he was diagnosed with leukaemia in 1989.

For the next few years he was in and out of hospital as he underwent various blood transfusions to try to remove the cancer from his system.

Bill had been responding well to the treatment when, in 1993, he and his wife Ruth were invited for a meeting with their consultant.

They hoped for the best and expected to hear the good news that Bill was in remission from leukaemia.

Instead, the couple were told that he had been infected with Hepatitis C, another deadly disease that at the time was incurable, through the use of contaminated blood products.

Bill eventually recovered from leukaemia but tragically passed away in 2009 as a result of the Hepatitis following an agonising 25 years of frequent hospital trips, constant health issues and turmoil with his family.

A loving husband and father-of-two, Bill was one of more than 3,000 people to have died after being infected with HIV and hepatitis from contaminated blood products from the 1970s to the early 1990s.

A report into the NHS’ infected blood scandal published last month found that it was ‘not an accident’ but the result of a series of shocking failures followed by a ‘pervasive’ cover-up.

It identified a litany of failures spanning multiple governments, prominent politicians and health organisations, with victims repeatedly lied to, misled and ignored, and children treated like ‘objects for research’.

In most cases, such as Bill’s, the victims and their families were not informed they had been infected until years later, with some told the chances of their survival were slim.

After Bill was diagnosed with leukaemia, between the Spring of 1989 and the autumn of 1990 he had transfusions at least three or four times a week.

He and his wife Ruth were in hospital ‘like a yoyo’, as he went through several treatments of chemo and radiotherapy. And after four years the couple were called into their consultant’s office with the hopes of finally having some good news.

Ruth told MailOnline: ‘So it was in 1993 when we went into a meeting with our doctor.

‘We thought he was going to give us some good news because by then Bill was near the remission stage for leukaemia. It’s five years after you first get it that if you haven’t got it back again then you were likely to be in remission.

‘So we thought it was going to be a good meeting and he invited me to come along as well. 

‘But the reason why he invited me along as well was because he wanted to tell us that he had found hepatitis C in Bill’s blood samples. And the only way he could have contracted hepatitis was through contaminated blood.

‘He said we were at that time importing blood from the American prison system and unknown to the consultant, that blood had been infected.

‘He told us that the blood had not been screened and there was a heat treatment that was available which could have reduced the risk, but that had not been undertaken, and his view was that was a decision based on the cost of the heat treatment.

‘He also told us at the same time that there was no known cure for hepatitis C and that there could be lots of consequences for Bill in terms of loss of functionality as he got older.

‘The victims of Hep C don’t die straight away and in Bill’s case it took 20 years of progressive and really serious decline.

‘But he was back to work after about a year and a half after his diagnosis and he actually got through the leukemia. And because he was an incredibly brave person he was working part-time until two months before he died.’

Bill was a physics teacher in the local school and had a ‘very supportive headmaster’ who was keen to keep him on, Ruth said.

Despite Bill’s unwavering courage to live his life to fullest, he and his family couldn’t escape the inevitable toll it took on their lives.

‘At the time when he became ill the children were seven, five, and two and so really a lot of the responsibility for the family and the finances rested with me,’ Ruth said. 

‘It was very hard for the children because you know when they were small we could protect them, but when they were teenagers it was very difficult because he became increasingly ill.

‘So we couldn’t do family holidays as he had to be able to come into hospital on short notice.

‘You couldn’t just go anywhere in the world in that situation and you certainly couldn’t travel in the UK very far without being within reach of the hospital.

‘It was a big economic blow and the kids I think had to take a lot of responsibility earlier than they may have done. They were very aware of the pain and suffering he was going through.

‘He got very confused in his brain. He was a very clever man with a doctorate in physics. This was not a man who is normally struggling to find his words, but he couldn’t recognize his own children at one point.

‘I can’t tell you how destressing that was for them and for me.

‘Bill would need to see a kidney specialist the liver specialist and he had three days a week in hospital having a dialysis machine put in for his kidneys. That was from 2004 to 2009.

‘Our house was a bit like a hospital because I was having to sterilize the sheets every day.’

The situation also caused Ruth to develop health problems of her own.

‘Through the years I developed back problems which were associated with stress because basically I was holding down a full-time job in London with a commute of an hour and a half miles away,’ she said.

Ruth is the chief executive of the Worker’s Education Association. Previously she was chief executive of the Chartered Management Institute, Institution of Mechanical Engineers and Investors in People UK. 

She is also a trustee of Peston’s Speakers for Schools and was awarded an OBE in 2007 for services to workplace learning. 

In 2016 Ruth gave evidence at the blood scandal inquiry, after which she suffered a brain haemorrhage, which she has thankfully now recovered from.

In spite of all this, Ruth nor Bill were ever offered any financial support.

‘I was looking after Bill and I was bringing up three children and you know people thought I was doing a lot and they try to help but there was no official help,’ Ruth said.

‘He was in dire straits many days. I was going to work leaving him in such a state, it made me feel dreadful.

‘I’ve never heard any formal counselling and the children have not had any support.

‘It’s felt like a very isolated and lonely journey.’

‘And I think that lack of help was a significant factor too Bill feeling abandoned. He wasn’t abandoned by his family, I mean he’s got an amazing family of quite a few brothers and sisters and we were all there for him. Myself and the children and my sisters, they were there for him

‘But in terms of what we got from anyone else and it was pretty much zero.

‘The worst part is that people knew that something wrong thing was being done and there was no admission.

‘It was all about saving their reputations, not facing the facts, concealing things when they could.

‘When Bill was treated for leukemia he had a very good consultant who was very conscientious but he really couldn’t look at us when he told us in 1993 that Bill was infected with Hep C.

‘He (the consultant) saved his life and we were so grateful to him but then we find out that Bill was going to go through 20 years with a very very difficult illness.’

Inquiry chairman Sir Brian Langstaff’s 2,527-page report revealed a litany of failures at the hand of the health service as well as multiple governments and politicians.

One crucial finding was the slowness of the response to the scandal.

It was apparent by mid-1982 that there was a risk that the cause of Aids could be transmitted by blood and blood products but it wasn’t until 1984 when UK blood services stopped collecting blood donations from prisons.

In 1989, hepatitis C, a previously unknown strain of the virus, was identified for the first time. It wasn’t until 1991 that the first test for the disease was made available.

Sir Brian said that the contaminated blood disaster is ‘still happening’ because patients who suffered ‘life-shattering’ infections continue to die every week.

He said: ‘In families across the UK, people were treated by the NHS and over 30,000 were given infections which were life-shattering. Three thousand people have already died and that number is climbing week by week. Lives, dreams, friendships, families, finances were destroyed.

‘What I have found is that disaster was no accident. People put their trust in doctors and the government to keep them safe and that trust was betrayed.

‘Then the government compounded that agony by telling them that nothing wrong had been done, that they’d had the best available treatment and that as soon as tests were available they were introduced and both of those statements were untrue.

‘That’s why what I’m recommending is that compensation must be paid now and I have made various other recommendations to help make the future of the NHS better and treatment safer.’

Sir Brian’s report made a series of recommendations including setting up an independent body to pay compensation to those affected and the introduction of a psychological support scheme for those affected.

It also recommended that the lessons learnt in the report, such as those around patient safety and risk, should be taught to people going through medical training.

For Ruth, one of the main actions that needs to be taken is the implementation of precise and accurate checks to ensure security of blood that is being given to people in the health system.

‘If we cannot be sure at the NHS if you have an accident or whatever and you’re having a transfusion that that blood is safe then we’re compounding massive errors that we’ve created already in the past and to everybody’s cost. So I think that’s number one,’ she said.

‘And I think there are the other things about enforcing a code of conduct. If people are knowingly bringing about the deaths of other people there have to be consequences.

‘There has have to be some accountability and at the moment I have not seen any of that so that’s a disappointment.

‘Taking an unacceptable risk where have to be penalties.

‘I’m not a vindictive person but in this particular case unless there are penalties people won’t take it seriously.

‘It’s one thing to apologize and it’s another to take the action that’s needed.

‘So I just hope that report is strong enough and clear enough and the intent of all of the people who contributed to it will be strong enough to go through these process now for a proper implementation plan.

‘This is not something that just happened. This is something that’s absorbed so much energy, so much resource personal resource, mental stress and you’ve got a little life you know.

‘And to not expect people to be fighting now for every penny is an insult and it shouldn’t be happening.

‘It should be clear soon what people are going to get and it should be an automatic process and people should have legal help if they need it and I want assurances about those things.

‘I’d like every Doctor who is going through training at the moment to have awareness of the risks of contaminated blood and I would like nurses and staff to have the power to raise concerns if they feel that procedures are not being met.

‘And I would also like to see patient advocates in every hospital so when you go in there is somebody you can turn to, there’s somebody there that you can contact, a phone line that you can use and you know you’re going to get their attention at that moment.

‘I will only rest once these recommendations have been put into effect and I do think that many many of the victims have our endured so much.

‘It’s been 35 years since this happened to Bill and all of that time his illness been present in our lives and it’s really hard to take in sometimes.

‘They (the victims) have been through every kind of harm there is.

‘They’ve lost in some cases they’ve lost children, they lost any kind of insurance in their life that they were going to be okay because that infection could have been passed on at any stage.’

Ruth has also advocated for the day that inquiry was published, May 20, to be made into a national anniversary in which people can come together, share their stories and remember loved ones.

But it would also serve as constant reminder for wider society about the devastating impact of the scandal and highlight the progress made since, in improving the healthcare system.

‘You can’t change the past but what you can do if you can listen to what went wrong and you can learn from it then we can change the future,’ Ruth said.

‘It’s so important for me and my children and my grandchildren that they never have to go through this and they can have confidence in the system.’