Mad Cows’ Disease: Still a Threat to All of Us

Veteran Portsmouth journalist Christine Lord talks to Sarah Cheverton about her book, Who Killed My Son? and her ongoing campaign for justice for her son, Andrew Black, who died in 2007 of the human form of BSE (Mad Cows’ Disease), aged just 24 years old. Christine’s most shocking revelation is that almost thirty years after the crisis began, BSE remains a killer disease.

How did you come to write your book Who Killed My Son?

I’ve worked as a journalist since I was sixteen. During the eighties, when BSE started killing cattle across the UK, I realised from my work in the media that information about the disease was being suppressed.

I was a single mum with a young son when the crisis started and I became so concerned that, from 1988, I banned all beef products from my and Andrew’s diet. I had a daughter in 1990 and she’s never eaten any beef products. I wanted to keep my family safe and even then, I didn’t believe what the media and the government were saying.

Andrew became ill in 2005. He became depressed and suffered from mood swings. I put it down to his age at first. He was a young man building a career in the media and suddenly he became quite introverted. He began losing work.

Our GP diagnosed Andrew with anxiety. He had a series of tests and then things seemed to settle down for a while. But by early 2006, he suddenly became very thin. He was working even less. He wasn’t the Andrew I knew at all.

Our GP sent him to a counsellor and gave him anti-depressants.

Andrew told me, ‘I’m not depressed, Mum, I just want to know what’s wrong with me.’

Christine Andrew New York Xmas2
Christine and Andrew visiting New York. (c) Christine Lord.

By Christmas 2006, Andrew was becoming more and more reclusive. He spent most of his time in his room. He was a totally different person. Before the illness, he was outgoing, social and very confident. He’d worked on a pilot for Sky television, he’d been very close to becoming a presenter on CITV. He was always out with his friends.

The doctors kept running tests.

One day there was something on the TV about BSE. Andrew turned to me and said, ‘I haven’t got that, have I, Mum?’

‘Of course not,’ I told him.

But that night I lay awake and in my mind, I went through all the symptoms Andrew was suffering from. I died a little bit that night as I realised my son probably had Variant CJD, the human form of Mad Cows Disease.

The next time we went to the hospital, I spoke to the doctors about my fear. They dismissed it at first. But after more tests, the doctors discovered he was dying from vCJD.

I know now that Andrew’s experience of diagnosis is common. GPs are not aware of the symptoms. Like many members of the public, they think it is a disease that has gone away.

Unfortunately it isn’t. Variant CJD (vCJD), continues to kill.

One in 2000 of us are either carrying or incubating the disease, which can have incubation periods of up to 50 years. There is an ongoing risk for generations of people.

Who Killed My Son is about my family’s journey through illness, bereavement and loss. It uncovers the political and ongoing implications of BSE for the public, now and for future generations, and the lies the public were told about the disease.

The book is part of a campaign – Justice 4 Andy – to get justice for my son and for the thousands of people that are affected by this disease. It’s part of a broader fight for safer food and safer health policies, including on blood and organ donation. The campaign also calls for full accountability for the victims of VCJD.

What have you discovered about BSE and vCJD as a result of Andrew’s death?

In the book I say that what I’ve found out is like a dystopian sci-fi novel.

I uncovered that as early as 1985 – 86, the government knew that if someone ate infected BSE material, it could kill them. The basic facts were covered up to protect the meat industries and the pharmaceutical industries – it was about money.

My son was killed at the altar of greed and money.

As a result of that cover-up, anyone in the UK who was alive in the eighties has been exposed to BSE.

Infected material was in HRT, toothpaste, vaccines, baby food, school dinners, even vegetarian dishes because the food labelling was so bad. Blood is not screened for vCJD and medical instruments are not cleaned to eradicate the potential for contamination by vCJD.

It’s vital to raise awareness that vCJD is an ongoing risk.

I’m a great supporter of blood donation and organ donation, but we need to make sure we’re screening for vCJD because we’re currently continuing to contaminate those supplies. We can screen donors, it’s a simple test to screen for vCJD but the government are holding back on it because they don’t want the public to know how many people are carrying it.

Do you think people are aware that vCJD is still a risk?

No. I’m still meeting families who have children in their twenties who are dying from vCJD now, but most people think the risk is in the past.

The Department of Health is aware of ‘silent carriers’ of the disease, which means they remain well but they have been implicated in passing blood to people who have then died from vCJD. There’s one donor I know of who gave blood for twenty years and is now linked to three deaths from BSE.

A lot of people don’t realise that anyone who has lived or worked in the UK for more than 3 months between 1980 and 1996 cannot give blood in the USA and other countries because internationally, it’s recognised that we are all at risk of vCJD.

I choose not to give blood because I could be at risk. My campaign fights for all blood donors to be screened.

The risk has not gone away.

Who Killed My Son? tells a story that is both tragic and devastating. As a writer and as a journalist, how did you approach the writing of the book?

When Andrew became ill, he told me, ‘Mum, whatever’s wrong with me, find out who did this to me, sue them and make sure this never happens to anyone else.’

His request has become my mission.

I’ve always kept written and photographic diaries. When Andrew became ill, I also began to keep a video diary. I wanted to have a record, not just as a mother, but in terms of factually documenting what was happening to us. All that material went into the book and the campaign.

I also undertook a lot of research about BSE and Variant CJD. I have a vast library of documents and reports that I cite in the book, which are also available on the campaign website. I interviewed – or in some cases, tried to interview – government ministers who had been involved in the crisis.

All that material became the foundation of the book. After the initial shock of Andrew dying, I worked with a friend on it and it took about eight months to write.

When I was writing the book, one of the problems was that I had too much material to include. So I’m preparing a second book called What Killed My Son? The first book took us up to 2011, and the second will bring us up to now.

I’ve also made three documentaries, which you can access on the website.

Andrew working at BBC studios.
Andrew working at BBC studios. (c) Christine Lord.

The book uncovers a long term campaign to mislead the public. Do you think the story you uncover in the book has any implications for our understanding of democracy in the UK?

Absolutely. What the public must realise is that every powerful minister and MP in Westminster have their own press crews, sometimes of up to 30-40 people, whose job it is to manipulate stories, to shape them, or to stop stories going out altogether.

I’m very interested in the ongoing child abuse inquiry that is fermenting in the background at the moment. The first round of allegations and news stories about that scandal was happening at the same time as the BSE crisis. I’ve recently written to Simon Danczuk offering to share my experiences because I believe there will be a crossover between that inquiry and my investigation into BSE. Ministers at the time were covering up BSE and that would have left them very open to manipulation and the possibility of corruption.

I believe we need some form of radical change within government. Even prior to Andrew being ill, I’d interviewed many MPs – on and off the record – and it’s obvious that our political system is still an old boys’ network. If you’re powerful enough within government, it’s possible to be above the law and no one should be above the law, no matter who you are.

Government regulates itself. They set their own salaries and when something goes wrong, they investigate themselves. Frankly, it stinks!

My hope centres on the young MPs starting to come into our political system that I’ve interviewed, from all parties. They are idealistic, full of hope, they want change. Unfortunately, the further you go up the greasy pole in politics at the moment, the more corrupt you have to become to keep that position.

I’d like to see us as a country get rid of that old blood in politics because they are manipulating the press, freedom of speech and fundamentally, our democracy.

In your book you demonstrate the government’s failure to acknowledge the truth about BSE and vCJD. How does that failure impact on the families affected by the disease?

It’s absolutely devastating. I’m a qualified counsellor as well as a qualified journalist, so I have quite a lot of insight into bereavement, both personally and professionally.

One of the most devastating things when you lose a child, particularly if they were killed unlawfully – and my barristers have told me that Andrew was definitely killed unlawfully – and there is no trial, no punishment, no accountability for their death, it just adds to the trauma suffered by the family.

John Gummer, Margaret Thatcher, John Major and others should be held responsible in a court of law for the deaths that their lies caused. But no one has been found accountable for those deaths, and they’re still happening.

Families of victims are routinely intimidated not to speak out. Lots of the families who spoke to me asked to remain anonymous for that reason.

For the families of victims, we know our children must have been infected by the food or medicines we gave our children. When your child is infected, families are told not to tell people about it, they’re made to feel as if it’s something shameful. I’ve met families who have been told explicitly by health professionals that their child is sick because the parents gave them ‘cheap meat’. That guilt compounds the trauma.

Many families affected by vCJD have had mental health issues, they’re unable to work or lose their careers. They’re utterly traumatised and many are unable to work again.

I’m traumatised by Andrew’s death but I suppose I’ve been able to channel my emotions outwards in a constructive manner. I still have black days even now because Andrew was my future and I miss him every single day. The way he died haunts me because vCJD is such a brutal disease.

In the book, you write about receiving anonymous threats to yourself and your family in the course of running the campaign. How do you deal with that?

When you hold your 24 year old, once fit and healthy, young son in your arms as he dies; when you’ve watched him become blind, deaf, quadriplegic, suffering from dementia; when you’ve watched that confident, successful child slowly lose everything he loved in life in such a slow, cruel way; when you’ve watched all that, you’re not afraid anymore.

I’m not afraid anymore because the worst thing that could ever have happened, has happened.

I think that makes me quite dangerous to the establishment. I’m not frightened of them. I’m not frightened of anything or anyone.

I was offered £120,000 by the government as a ‘no fault, no blame’ package. I told them to stick it. I’m not a wealthy woman, but I cannot be bought, I cannot be silenced and I cannot be corrupted.

Have you ever worried about being sued?

Never. I’d welcome it. Bring it on, John Gummer. Bring it on Kenneth Clarke, I’ll see you in court.

I’ve never had as much as a solicitor’s letter, even when the book was published.

Off camera, I’ve had threats from John Gummer, I’ve received threats over the phone. I’ve received subtle threats from various individuals unknown to me at public events.

The intimidation is undercover, it wears a benign face. I think that’s more dangerous. I call them creatures of the night. They’ll come on Question Time, present themselves as good guys but underneath, they’re very dangerous, sinister people.

Where does the campaign go from here?

Since the Conservatives have been back in government it’s been quite hard to move forward with the campaign because of the relationships between past and present ministers.

Christine holding Andrew as he dies.
Christine holding Andrew as he dies.

Despite this, I’m very upbeat. Things are moving forward slowly.

There was a government inquiry last year into blood safety and the risk of vCJD and I gave written and oral evidence to the inquiry panel. They concluded that we need to screen blood donors for vCJD and included that alongside other recommendations to government: to undertake a study to find out the prevalence of vCJD, to screen for those at risk of it, and to explore whether incidents of vCJD in the elderly are being misdiagnosed as dementia.

The government published the final inquiry report on a Friday night and the media barely picked it up. David Cameron has ignored the recommendations put forward by the panel.

But I remain hopeful.

When we launched the campaign website, we had a million hits in one day. People from all over the world contact me every day to share stories of their loved ones who are dying or have died from vCJD.

Whether the government likes it or not, this is a story that isn’t going to go away.