Sentenced to a life on death row

During the 1970s and 1980s nearly 5,000 people were exposed to Hepatitis C. Of these more than 1,200

On Monday 4 June Haydn Lewis will give evidence to the independent Archer inquiry into the supply of contaminated blood products to UK haemophilia patients.

The inquiry is being privately funded - the government says treatment was given in good faith. More than 1,700 patients have died, many others are terminally ill.

My name is Haydn Lewis and I have mild haemophilia, a genetic condition which I was born with in 1956.

Haemophilia is treated by injection of a missing protein and up until 1974 I only received British blood products donated by volunteers.

However, by 1973 the first commercial blood products were imported into the UK. These doses were prepared from pooled plasma from thousands of donors. If some of the donors had a blood borne virus, such as hepatitis C or HIV, then it could infect the whole batch.

Without consent or being informed of the known risks, I was prescribed commercial products from high risk paid donors. This meant that there was an increased risk of hepatitis, HIV, or any other blood borne virus.

In 1985 I was informed I had contracted HIV, even though my medical records state I tested positive a year earlier.

But let's go back a decade. Two things remind me of 1975. It was the year I got married to my wife Gaynor and the year when Labour's then Health Minister David Owen announced he would ensure Britain's blood transfusion services were the safest in the world by implementing a policy of self sufficiency, only using British blood donated by volunteers.

He was advised by treating consultants that a target of 30 to 40 million units would be needed to meet future demand. Owen instructed officials in the Department of Health that his target should be met by 1977.

By 1978 I was the proud father of two healthy sons - in itself a relief because haemophilia is carried through the female line.

We subsequently decided that Gaynor should be sterilised to avoid further pregnancies. It also allowed us to have unprotected sex.

Following my diagnosis in 1985, my wife tested positive for HIV in 1988, this was also the first year I was tested without consent for Hepatitis C.

But I was only informed I was Hep C (HCV) positive in 1994 and then only when I asked. My treatment for Aids began in 1995.

In 2001 I was informed that I had received several different batches of blood products donated by a victim of vCJD.

It's my contention that government did not want patients to know of their HCV results in 1990 because there were ongoing legal cases relating to the HIV infection of Haemophiliacs.

At this present time my wife and I are both coping with triple combinations of drugs for our HIV+ condition. It's only by the grace of god my boys are not HIV or Hep C+ (HCV).

No two days are the same in the way they affect our ability to deal with and try to lead a normal family life. Our levels of energy range from being able to walk around the local park three times a day at best, to only once if we are lucky.

I am writing this as someone who has been prompted by his infection - and that of his wife - to question the actions and practices of government and the NHS between the late 1960s and the 1990s.

The Archer inquiry has been set up to look at the use of voluntary donated and commercially purchased contaminated blood products by the NHS and the impact of that policy on individuals.

The Inquiry has heard testimony from the infected and the affected.

The witnesses have raised many moral and ethical issues about how patients, were treated by consultants, the impact of government policy through the 70s and even up to the present time concerning non-consensual testing of blood for vCJD.

There are many factors to consider, yet there can be none more important than the political and economic decisions that have affected the care of patients.

Whilst government announces it is releasing yet more documentation, little has been said which might serve to clear the muddy waters for Lord Archer.

Could it be that the systemic failures of successive governments will be buried in a pile of paperwork?

When the first commercial blood products were privately imported into the UK in 1973, the practice of consultants encouraging haemophiliac patients out of hospital beds and on to home treatment was already well under way.

These commercial concentrates were not the safest of products, yet there is evidence of consultants by-passing the Ethics Committees of the GMC and MRC by importing these medicines under the pretext of “Life Support Therapy”.

But mild haemophiliacs like me were not in this category and consequently were not deemed to have a life-threatening diagnosis.

Consultants continued with their home treatment crusade for 10 years and by May 1983 - despite the proliferation of warnings from official bodies - they still had their heads in the sand.

With the UK lagging some 3 years behind the USA, there was plenty of information out there about the risks to haemophiliacs from blood-borne diseases but apparently never occurred to those in charge of treating us.

In my view there is only one conclusion the Archer Inquiry can reach - that ministers failed in their duty of care.

It is not surprising then there are reports that the Department of Health has given instructions to the medical profession NOT to get involved with the Inquiry.

Even more damning is the way they have dealt with their policy of damage limitation.

The haemophilia community, was not informed of the increased risks from commercial products and couldn't therefore make an informed choice about treatment.

Having choices in life makes one feel human, having multiple viruses takes those choices away.

Governments are judged on the way they treat the most vulnerable and they should be in no doubt about how I feel.

I feel as if I have been sentenced to a life on death row. But it wasn't for a crime I committed - it was the crime of successive British governments and it's more than time that they answered for their actions.

You can find out more about this issue by going to Tainted Blood and to the Haemophilia Society.

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“I felt so frantic I couldn’t see my screen”: why aren’t we taking mental health sick days?

Some employees with mental health problems fake reasons for taking days off, or struggle in regardless. What should companies be doing differently?

“I would go to the loo and just cry my eyes out. And sometimes colleagues could hear me. Then I would just go back to my desk as if nothing had happened. And, of course, no one would say anything because I would hide it as well as I could.”

How many times have you heard sobbing through a work toilet door – or been the person in the cubicle?

Jaabir Ramlugon is a 31-year-old living in north London. He worked in IT for four years, and began having to take time off for depressive episodes after starting at his company in 2012. He was eventually diagnosed with borderline personality disorder last January.

At first, he would not tell his employers or colleagues why he was taking time off.

“I was at the point where I was in tears going to work on the train, and in tears coming back,” he recalls. “Some days, I just felt such a feeling of dread about going into work that I just physically couldn’t get up ... I wouldn’t mention my mental health; I would just say that my asthma was flaring up initially.”

It wasn’t until Ramlugon was signed off for a couple of months after a suicide attempt that he told his company what he was going through. Before that, a “culture of presenteeism” at his work – and his feeling that he was “bunking off” because there was “nothing physically wrong” – made him reluctant to tell the truth about his condition.

“I already felt pretty low in my self-esteem; the way they treated me amplified that”

Eventually, he was dismissed by his company via a letter describing him as a “huge burden” and accusing him of “affecting” its business. He was given a dismissal package, but feels an alternative role or working hours – a plan for a gradual return to work – would have been more supportive.

“I already felt pretty low in my self-esteem. The way they treated me definitely amplified that, especially with the language that they used. The letter was quite nasty because it talked about me being a huge burden to the company.”

Ramlugon is not alone. Over three in ten employees say they have experienced mental health problems while in employment, according to the Chartered Institute of Personnel and Development. Under half (43 per cent) disclose their problem to their employer, and under half (46 per cent) say their organisation supports staff with mental health problems well.

I’ve spoken to a number of employees in different workplaces who have had varying experiences of suffering from mental ill health at work.

***

Taking mental health days off sick hit the headlines after an encouraging message from a CEO to his employee went viral. Madalyn Parker, a web developer, informed her colleagues in an out-of-office message that she would be taking “today and tomorrow to focus on my mental health – hopefully I’ll be back next week refreshed and back to 100 per cent”.

Her boss Ben Congleton’s reply, which was shared tens of thousands of times, personally thanked her – saying it’s “an example to us all” to “cut through the stigma so we can bring our whole selves to work”.

“Thank you for sending emails like this,” he wrote. “Every time you do, I use it as a reminder of the importance of using sick days for mental health – I can’t believe this is not standard practice at all organisations.”


Congleton went on to to write an article entitled “It’s 2017 and Mental Health is still an issue in the workplace”, arguing that organisations need to catch up:

“It’s 2017. We are in a knowledge economy. Our jobs require us to execute at peak mental performance. When an athlete is injured they sit on the bench and recover. Let’s get rid of the idea that somehow the brain is different.”

But not all companies are as understanding.

In an investigation published last week, Channel 5 News found that the number of police officers taking sick days for poor mental health has doubled in six years. “When I did disclose that I was unwell, I had some dreadful experiences,” one retired detective constable said in the report. “On one occasion, I was told, ‘When you’re feeling down, just think of your daughters’. My colleagues were brilliant; the force was not.”

“One day I felt so frantic I couldn’t see my screen”

One twenty-something who works at a newspaper echoes this frustration at the lack of support from the top. “There is absolutely no mental health provision here,” they tell me. “HR are worse than useless. It all depends on your personal relationships with colleagues.”

“I was friends with my boss so I felt I could tell him,” they add. “I took a day off because of anxiety and explained what it was to my boss afterwards. But that wouldn’t be my blanket approach to it – I don’t think I’d tell my new boss [at the same company], for instance. I have definitely been to work feeling awful because if I didn’t, it wouldn’t get done.”

Presenteeism is a rising problem in the UK. Last year, British workers took an average of 4.3 days off work due to illness – the lowest number since records began. I hear from many interviewees that they feel guilty taking a day off for a physical illness, which makes it much harder to take a mental health day off.

“I felt a definite pressure to be always keen as a young high-flyer and there were a lot of big personalities and a lot of bitchiness about colleagues,” one woman in her twenties who works in media tells me. “We were only a small team and my colleague was always being reprimanded for being workshy and late, so I didn’t want to drag the side down.”

Diagnosed with borderline personality disorder, which was then changed to anxiety and depression, she didn’t tell her work about her illness. “Sometimes I struggled to go to work when I was really sick. And my performance was fine. I remember constantly sitting there sort of eyeballing everyone in mild amusement that I was hiding in plain sight. This was, at the time, vaguely funny for me. Not much else was.

“One day I just felt so frantic I couldn’t see my screen so I locked myself in the bathroom for a bit then went home, telling everyone I had a stomach bug so had to miss half the day,” she tells me. “I didn’t go in the next day either and concocted some elaborate story when I came back.”

Although she has had treatment and moved jobs successfully since, she has never told her work the real reason for her time off.

“In a small company you don’t have a confidential person to turn to; everyone knows everyone.”

“We want employers to treat physical and mental health problems as equally valid reasons for time off sick,” says Emma Mamo, head of workplace wellbeing at the mental health charity Mind. “Staff who need to take time off work because of stress and depression should be treated the same as those who take days off for physical health problems, such as back or neck pain.”

She says that categorising a day off as a “mental health sick day” is unhelpful, because it could “undermine the severity and impact a mental health problem can have on someone’s day-to-day activities, and creates an artificial separation between mental and physical health.”

Instead, employers should take advice from charities like Mind on how to make the mental health of their employees an organisational priority. They can offer workplace initiatives like Employee Assistance Programmes (which help staff with personal and work-related problems affecting their wellbeing), flexible working hours, and clear and supportive line management.

“I returned to work gradually, under the guidance of my head of department, doctors and HR,” one journalist from Hertfordshire, who had to take three months off for her second anorexia inpatient admission, tells me. “I was immensely lucky in that my line manager, head of department and HR department were extremely understanding and told me to take as much time as I needed.”

“They didnt make me feel embarrassed or ashamed – such feelings came from myself”

“They knew that mental health – along with my anorexia I had severe depression – was the real reason I was off work ... I felt that my workplace handled my case in an exemplary manner. It was organised and professional and I wasn’t made to feel embarrassed or ashamed from them – such feelings came from myself.”

But she still at times felt “flaky”, “pathetic” and “inefficient”, despite her organisation’s good attitude. Indeed, many I speak to say general attitudes have to change in order for people to feel comfortable about disclosing conditions to even the closest friends and family, let alone a boss.

“There are levels of pride,” says one man in his thirties who hid his addiction while at work. “You know you’re a mess, but society dictates you should be functioning.” He says this makes it hard to have “the mental courage” to broach this with your employer. “Especially in a small company – you don’t have a confidential person to turn to. Everyone knows everyone.”

“But you can’t expect companies to deal with it properly when it’s dealt with so poorly in society as it is,” he adds. “It’s massively stigmatised, so of course it’s going to be within companies as well. I think there has to be a lot more done generally to make it not seem like it’s such a big personal failing to become mentally ill. Companies need direction; it’s not an easy thing to deal with.”

Until we live in a society where it feels as natural taking a day off for feeling mentally unwell as it does for the flu, companies will have to step up. It is, after all, in their interest to have their staff performing well. When around one in four people in Britain experience mental ill health each year, it’s not a problem they can afford to ignore.

If your manager doesn’t create the space for you to be able to talk about wellbeing, it can be more difficult to start this dialogue. It depends on the relationship you have with your manager, but if you have a good relationship and trust them, then you could meet them one-to-one to discuss what’s going on.

Having someone from HR present will make the meeting more formal, and normally wouldn’t be necessary in the first instance. But if you didn’t get anywhere with the first meeting then it might be a sensible next step.

If you still feel as though you’re not getting the support you need, contact Acas or Mind's legal line on 0300 466 6463.

Anoosh Chakelian is senior writer at the New Statesman.