Mr Tom Clarke (Coatbridge, Chryston and Bellshill) (Lab)
I beg to move,
That leave be given to bring in a Bill to establish a committee to advise on haemophilia; to make provision in relation to blood donations; to establish a scheme for NHS Compensation Cards for people who have been treated with and infected by contaminated blood or blood products; to make provision for the financial compensation of people treated with and infected by contaminated blood and blood products and their widows, dependants and carers; to establish a review of the support available for people who have been treated with and infected by contaminated blood or blood products; and for connected purposes.
Let me first pay tribute to the late Lord Morris of Manchester, who not only campaigned on this highly disturbing issue, but persuaded another place to pass a Bill similar to mine, which I sought to promote in the House of Commons but which ran out of time. As well as paying tribute to Alf Morris for his huge commitment to those who suffered from problems arising from haemophilia and contaminated blood—he was indeed a tenacious fighter—I want to mention his successor in Wythenshawe and Sale East, our late and dedicated friend Paul Goggins, who held the most recent debate on this matter in Westminster Hall on 29 October last year. I also thank the Haemophilia Society as well as Members in all parts of the House for the support that they have given to an ongoing and thoroughly necessary campaign.
Let me say first that although the Bill applies to this Parliament, it is entirely appropriate for a Scottish Member to feel comfortable about advocating its provisions. I want to see an end to injustice throughout the United Kingdom, and I believe that the Bill runs in tandem with our expectations of the Penrose inquiry, which is currently taking place in Scotland, where similar injustices simply have to be put right.
I ask the House to consider a measure that was drafted to give recognition and support to one of the most needful minorities in Britain today. A group of nearly 5,000 people disabled by haemophilia—a rare lifelong blood disorder requiring continuous medical treatment—have been infected by contaminated blood and blood products used in their NHS treatment. Ninety-five per cent. of those people were infected with hepatitis C, and 25% were infected with both HIV and hepatitis C. Sadly, of those almost 5,000 people, at least 1,757 have since died from the effects of the viruses.
Apart from the obvious impact on health, such conditions have implications for people’s ability to work full time, if at all. They face many burdens, and extra costs that are far too high for many of them to cope with. People who are suffering in these dreadful circumstances—and we should also bear in mind the impact on their families—have waited far too long for the remedies that I believe are in my Bill.
In January 2011, two years after the independent inquiry led by the late Lord Archer, the Government concluded their review of the support available. Although we welcomed the lump sum and annual payments that were awarded to the 20% of sufferers who had reached stage 2 of hepatitis C—which is, essentially, cirrhosis of the liver—that clearly did not go far enough, given the 80% of patients who are not supported and who carry very painful physical burdens.
John Prior, a 39-year-old who lives in Moodiesburn in my constituency, contracted hepatitis C from contaminated blood in 1994, when he was just 20 years old. When I spoke to him at the weekend, he told me of the difficulties and stigma involved in having hepatitis C. He had been told for many years that he did not have hepatitis A or B, and was lucky not to have HIV. Information on his particular case was withheld for long periods. He and so many other people are clearly being penalised again and again. They had the misfortune to find themselves with haemophilia, and their condition was then made worse when they approached the NHS.
Philip Dolan is a former vice chair of the UK Haemophilia Society. He has haemophilia himself. He explained to me that he asked his consultant in 1991 whether he had hepatitis C and was told that in 1978 he had been tested without his permission for hepatitis. His doctors informed him that “We knew in 1978 that you had non-A and non-B hepatitis,” so he sadly had been diagnosed with hepatitis C but not informed.
Like many others, Philip recently received a letter from the NHS and was told that he may have received a blood donation from an individual who later died from variant Creutzfeldt-Jakob disease. That raises profound questions for Philip and those others, given that there is no known cure for that condition.
It cannot be right that 80% of the sufferers involved receive no financial support. It cannot be right that many are left without counselling and that there is such an absence of transparency. It cannot be right that in Yorkhill children’s hospital in Glasgow many of those who received contaminated blood were infected with HIV and that a large number of those patients’ medical notes were simply lost. It cannot be right that 365 patients throughout the UK have had the same experience.
Too much has been hidden for too long. That is why I am proposing to establish a committee to advise on contaminated blood; I believe it should have comprehensive powers and the right to ask whatever questions it feels are appropriate. My Bill seeks to establish a scheme for NHS compensation cards that would allow those affected to receive freely, if needed, prescription drugs, counselling, physiotherapy, occupational therapy and other therapies allied to medicine and home nursing.
It is essential that we create a better and more comprehensive screening programme to establish what viruses the patients may or may not have contracted. It is essential to make provision for financial compensation for people treated with, and infected by, contaminated blood or blood products and their widows, dependants and carers. It is essential to establish a review of the support available to people treated with, and infected by, contaminated blood or blood products.
The truth is that Britain compares very unfavourably in these matters with other countries—the Irish Republic, for example. It, too, had an inquiry, as a result of which comprehensive and substantial support was given, including the underwriting of mortgages and travel insurance. It also gave upwards of €300,000 in one-off payments to each of the patients affected. The comparisons are bad enough, but those decisions were taken 13 years ago. The truth is that sufferers in Britain have been incredibly patient and are now rightly telling us that they have waited for far too long.
It is important that we address the unmet needs of infected patients and bereaved families. We have to be honest about highly disturbing administrative shortcomings, serious omissions and a failure to inform Parliament of the facts as to why provision made in other countries is so much better than here in Britain.
For us, justice postponed is justice denied. I very much welcome the fact that Lady Morris has been following our proceedings this afternoon, and I hope my Bill does justice to her husband’s memory and the people whom he spent a lifetime serving.
Question put and agreed to.
Ordered,
That Mr Tom Clarke, Mike Kane, Mr Nicholas Brown, Sandra Osborne, Mr Jim Cunningham, John Healey, Alistair Burt, Ann McKechin, Jason McCartney, Mr Charles Kennedy and Joan Walley present the Bill.
Mr Tom Clarke accordingly presented the Bill.
Bill read the First time; to be read a Second time on Friday 6 June and to be printed (Bill 187).