Contaminated Blood

Debate between Diana Johnson and Huw Irranca-Davies

Thursday 15th January 2015 Commons Chamber

[Huw Irranca-Davies]

I agree very much with my hon. Friend. We need a UK solution because this is a UK problem, so work must be done in concert with the devolved Administrations and Governments.

My constituent says that in 1982:

“We were called into consultant’s office, at the…Hospital…My future wife was pregnant and we were strongly advised to have a termination. However, he was not specific about reasons why, other than the possibility of our child either having or carrying haemophilia, so we refused.

1983—Our son was born and they wanted to take a blood test from him. It was after this they told us of my…HIV infection, at this early stage they had no idea what it entailed. We were advised not to mention to other patients at the hospital and to refrain from sexual intercourse until they knew more. Thankfully our son did not have the virus. Feeling uncertain about the future, it was awful to be told we had to keep this to ourselves. At this time it was very much publicised in the media and friends of ours, who knew of my Haemophilia began questioning us on whether or not I had been affected. Suffice to say I felt I was on borrowed time and on my own admittance, went off the rails and neglected my son and new wife.

1985—My wife fell pregnant again and convinced I was going to die sometime soon, the fear and uncertainty about the future made us feel we had no option but to have a termination.”

He goes on to say that a support group was set up and:

“We began attending meetings with the group and felt better for the support but sadly the participants began dying at an alarming rate and it just made the situation worse.

1991—My brother, who also had Haemophilia and HIV passed away. Prior to this we had undergone clinical trials at the hospital and because we were brothers, he was given the placebo. The guilt I felt because I was taking the actual product and had survived was indescribable. The following year my second brother was tragically killed.

1993—In short I had given up, I knew I was going to die and felt I could fight no longer. I ended up in hospital with PCP pneumonia and my wife was told I had a matter of weeks. Even though I had given up on myself thankfully my family and the hospital staff hadn’t…and I eventually pulled through.”

He goes on to describe their three-and-a-half-year fight from 1995 to become the first couple with HIV status in the UK to adopt despite being told no, no and no again. He continues:

“2001—We were asked to consider adopting two more children”,

in addition to the one they had adopted during that period,

“a boy and a girl aged five and seven. We agreed and my wife finally had the family she had been craving. It was just after this, I was told I had also contracted Hepatitis C and possibly vCJD. Obviously we were devastated and all the old uncertainties we had pushed to the back of our minds pushed forward with force. However, all was not lost I was assured a treatment was available.

2002—Late in the year, I began treatment for Hepatitis C. We had been warned prior to this, I wasn’t going to be easy to live with but looking back now I feel this was an understatement. The two children we had living with us, had severe psychological problems and their behaviour just served to exacerbate the situation and subsequently the placement broke down.

2003—The two children went back into care and I found myself unable to cope with my grieving wife and my two existing children. I wasn’t in a very good place at this time and my wife and I came very close to separation. It was only because we had been together since we were sixteen and married at seventeen, we worked to stay together. The treatment reacted with my HIV drugs and I ended up in High Dependency with Pancreatitis. Following this, my wife had to sell her business as I was ill and unable to cope at home without significant help.”

[Diana Johnson]

My hon. Friend is making an incredibly powerful case, but what strikes me is that not only the individual is suffering but the family members are, too—the wife, the children and everyone else. It is striking.

[Huw Irranca-Davies]

Absolutely. It rips through not only the individual but their families, friends and every other aspect of their life.

I will continue to the end of my constituent’s story, as it goes on to this day. In 2004, the selling of the business meant that they had limited income and were unable to meet their bills. The debts piled up during their financial struggles and this put additional strain on the marriage. He goes on:

“2005—Our debt situation was spiralling out of control and as I felt a little better in myself my wife, who had studied for a degree while she was out of work could now get a…job as a care manager and she went back to work full time.

2006—We were asked about taking another child for adoption. Understandably following the breakdown of the last placement we were wary but agreed as everything seemed far better than it had been. It was in 2007 we had our second adopted daughter.”

From 2006 to 2010 they saved what they could to clear the debts they had accumulated since 2003. For the next few years, because of his deteriorating health, his wife had to return to part-time work rather than full time and the debts accumulated again. To bring this up to date:

“We have cleared our debts and with my wife working part time we are managing day to day to keep our heads above water. We have the basics we cannot save money or enjoy holidays. We keep away from past friends as I am well aware of how ill I look and do not want to answer their questions. I take a great deal of medication and am trying to live with the side effects, as is my wife!

The Macfarlane Trust had recently sent us a ‘disbursement of reserves’ form, requiring personal and in depth information to enable us to possibly have some money for home improvements. My wife and I felt it was an extremely unjust and unfair way of attempting to distribute funds amongst sufferers of HIV and their families. Not everyone would, or could qualify as they were in rental accommodation, or perhaps their home was not in need of improvements. It was causing a divide amongst the few that have survived this atrocity and we refused to complete it as any reserves we felt need to be distributed equally amongst those of us that are left. It seems the discrimination, separation and sheer lack of consideration for the primary beneficiaries is still very much in evidence.”

My constituents, like those mentioned in so many stories today, are asking not to have to go out with a begging bowl in complex situations, having to prove that they are worthy. This is an entitlement, not something to be begged for. They want some form of inquiry and a clear apology and there is a crying need for root and branch reform of the structures that have been put in place to help them. This is not working satisfactorily.

My constituents’ story will be reflected in the story of every person and every family affected. The disease does not simply affect them; it forces many into penury, marital difficulty and so many other social problems. It is time to sort this out once and for all.