I apologise for my cold, but I promised my constituent, John Prior from Moodiesburn, this morning that I would seek to put on record a very controversial letter—some would say a lengthy letter—which he sent to me and which I thought I should share with the House.
Before doing that, I congratulate the all-party group on its comprehensive report and the right hon. Member for North East Bedfordshire (Alistair Burt) on the way in which he introduced the debate and on the work that he is doing. I welcome the other speeches that we have heard, including the one from my hon. Friend the Member for Kingston upon Hull North (Diana Johnson).
I turn to the letter from my constituent, a voice that I think should be heard. John Prior said this:
“I was told aged 20 in 1994 that I had chronic hepatitis C by my haemophilia consultant at the Glasgow Royal Infirmary. I had been given contaminated blood as a child at Yorkhill children’s hospital in Glasgow.
The blood was donated from pooled donations of thousands of donors including prisoners in US jails. The haemophilia doctor told me I would eventually need a liver transplant but did not know when. He said it could be 3 months, 3 years or 30 years.
I was in complete shock, myself and my family thought I had AIDS. It’s been like living on death row not knowing when I would need a liver transplant.
To my horror, my GP wrote to my employer and told them I had hepatitis C and did not expect me to work for more than 7 years due to my infection. The letter was dated one year before I was told I had hepatitis C, so my work knew about my infection before myself.
As an adult I kept my hepatitis C status to myself and close friends and family. I never told my colleagues. I only told one of my bosses as I was struggling in work, I couldn’t concentrate and kept nodding off at my desk. He’s been very supportive and lets me do menial jobs that don’t require much thought. My sick record at work is horrendous and I’m lucky to still have a job.
Relationships were virtually impossible for me as I felt worthless and frightened I would infect someone. I could not get a mortgage, and life insurance and travel insurance are prohibitive.
My treatment at one stage was 20 tablets a day and 2 injections a week into my stomach which I did myself for 6 months. It was a horrific experience and I felt I just wanted to die. At one point the nurse took blood from me for part of a study into why people with hepatitis C are dying at different rates. She told me she was surprised I was not taking anti-depressants.
My liver consultant applied to Skipton for the stage 2 payment but my application was rejected because I had not reached the ‘crisis’ point. How can a charity ignore the recommendations of a liver consultant? My experience with Caxton was just as bad. It would take numerous emails and phone calls to get in contact with them. I felt like I was begging the way, they treated me, they insisted I provide a letter from my consultant to confirm I was on treatment. It was I who had to run around seriously ill arranging everything for Caxton. I will never contact Caxton again. These charities are not fit for purpose”.
My constituent goes on to make other comments which I think it best not to repeat. His letter goes on to say:
“Over 80% of victims do not receive any ongoing financial help from Skipton yet we are ill.”
He concludes:
“After all that’s happened to myself I will have to be reassessed by the DWP for my entitlement to DLA which I use for my Motability car. I was originally awarded DLA for life 24 years ago. I am worried sick that I will lose my car as I need it to get me to work/hospital appointments. Does my Government expect me to take infected dirty syringes onto a bus? My health will only deteriorate. There is no cure for severe haemophilia. Government policy gave me hepatitis C yet they want to reassess me for DLA.”
That took some time, but I do not apologise. It is right that people who have had such experience should have their voices heard.
I referred earlier to legislation. So complex are the issues and so long have they gone on that legislation is necessary. I attempted to carry through this House the Alf Morris Bill which had made its way through the House of Lords. Unfortunately, we ran out of time. In March last year I succeeded in introducing a ten-minute rule Bill, which went a little further than the report. For example, it included the need for an NHS compensation card, which would lead to priority treatment. Following that, I had a meeting with the then Leader of the House, where it was made clear to me that time would not be made available. I am not sure that he shared the sense of urgency that I tried to impart.
I believe profoundly that an apology, important though it is, is not enough. Compensation is appropriate. There ought to be closer working between the DWP and the NHS. We have many lessons to learn from Ireland and elsewhere. I acknowledge those who have worked so
very hard on this issue, especially Lord Morris, whom we remember with great affection today. We owe it to them to deliver.
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