– in the Senedd on 25 January 2017.
Item 5 on the agenda is a debate by individual Members under Standing Order 11.21 on contaminated blood. And I call on Julie Morgan to move the motion. Julie.
Motion NDM6191 Julie Morgan, Dai Lloyd, Rhun ap Iorwerth, Mark Isherwood, Hefin David, Jenny Rathbone
To propose that the National Assembly for Wales:
1. Calls on the UK Government to hold a full public inquiry into the contaminated blood tragedy of the 1970s and 1980s.
2. Notes that 70 people in Wales have died from HIV and Hepatitis C acquired when they received contaminated blood or blood products and others are still living with these diseases.
3. Acknowledges that bereaved relatives are living with the consequences of this tragedy.
4. Notes that, in March 2015, the UK Government apologised to people infected by contaminated blood treatment and further notes that the affected families have never received full answers about how this was allowed to happen and are still campaigning for justice.
Thank you, Deputy Presiding Officer, for calling me to open this individual Member’s debate, calling for a full public inquiry into the contaminated blood tragedy of the 1970s and 1980s, and thank you to the cross-party Members who have jointly submitted this motion with me: Dai Lloyd, Mark Isherwood, Hefin David, Jenny Rathbone and Rhun ap Iorwerth, who will conclude the debate, and I know that there are other speakers as well.
Seventy Welsh people have died in what has been called the biggest national tragedy ever in the NHS—273 people were infected by contaminated blood in Wales. Many of them are still suffering and the pain still continues for them and their families. In the 1970s and 80s, 4,670 people in the UK suffering from haemophilia contracted hepatitis C, and between 1983 and the early 1990s, 1,200 were infected with HIV. The names of 49 of the 70 who died are appearing on the screens in the Chamber now, and will appear again in the concluding speech. We want this to be an opportunity for Assembly Members to hear the stories of some of those people, and I hope that the National Assembly for Wales will send a clear message to the Government in Westminster that we need a public inquiry to look into this contaminated blood scandal.
Can I ask whether you’ll give way or not?
Yes. Briefly.
Thank you Julie for giving way. Could I just say the debate today, but also the call for the public inquiry, has the support of my constituents in Llanharry and also in Maesteg, who I’ve dealt with over many, many years? My constituent from Llanharry whose son was infected by hepatitis C aged 12 and whose liver is borderline cirrhotic, who also had her two nephews infected at the same time, one of whom subsequently died and the other had a liver transplant, may draw attention to Lord Winston’s description of this as the worst treatment disaster in the history of the NHS. You have their support, and this call for a public inquiry has their support, as do many others.
I thank the Member for that contribution. At this point, can I pay tribute to Lynne Kelly and Haemophilia Wales for the work that they’ve done, not only to highlight the issue and the need for a public inquiry, but also for the work they’ve undertaken to try to achieve fair payments for those who have suffered, and for their families? We know that the consultation about the money payments in Wales is only just concluding, and that the health Minister will be making a decision about what those payments are. We know that the families are unhappy about the English scheme, and tend to feel that they’ve been thrown crumbs from the table.
The reason that people affected by this scandal, led by Haemophilia Wales, feel that they now need a public inquiry is simple: it is a quest for the truth. They’ve been on a long journey, from individuals and their families first being told that they’d been given contaminated blood and that they could develop HIV or liver disease, to dealing with increasingly poor health, to fighting for compensation payments. In the past, many of them felt that they could trust the Government to do the right thing, that they would get the support they need because their lives had been damaged beyond repair through no fault of their own. That view has now changed. They want a public inquiry in order to get at the truth about what happened when they received contaminated blood. The Archer report was an independent inquiry, but it did not serve the purpose of a full public inquiry. It was not a statutory inquiry under the Inquiries Act 2005, it had no power to compel anyone to give evidence, or to produce documents. The Department of Health actually declined to provide witnesses to give evidence in public. In addition, its remit was not to find out what happened, who was at fault, but to find a way forward.
So why do they want a public inquiry? They want a public inquiry to find out why blood continued to be given in the 1970s and 1980s when the dangers of infection were known. The Archer report said that the blood industry was a powerful lobby. Why did blood continue to be imported from the United States, where a large proportion of the blood was from paid donors and came from those who most needed money, those who were most susceptible to infection, and often infection that was not treated? Why did the ministerial papers disappear? In 1975 Lord Owen, who was health Minister at the time, set aside money for the UK to become self-sufficient, so there would no longer be any need to import blood. In 1987, long out of office, when he learnt that self-sufficiency had not been achieved, he sought access to the ministerial papers at the time and found that they had been destroyed under the 10-year rule. Does anyone know what the 10-year rule is? All this needs to be finally cleared up. David Cameron apologised last year for the tragedy, but he did not grant a public inquiry. That’s what we’re asking for now.
Before I conclude, I want to refer to some of the people and families affected by this scandal. Barbara Tumelty is my constituent, and she says to me:
‘I am writing as a bereaved family member concerning the contaminated blood scandal. I would like you to mention my brothers’ names in the Assembly debate. They are Haydn and Gareth Lewis. They died May and June 2010, and both were infected with HIV and Hepatitis C and possibly CJD too. I would ask you to call for a full public inquiry as was granted to Hillsborough families eventually. Although the UK Government has issued an apology, we, as families, still seek to find answers and accountability for actions that still go without blame all these years later. Gareth was the co-founder of the Birchgrove Group, a support group that was set up to help haemophiliacs, and their families, who were infected with HIV, and was the founder of Haemophilia Wales.’
Leigh Sugar is Mick Antoniw’s constituent, and this is what his widow, Barbara Sugar, asked me to say,
‘My husband, Leigh Sugar, was a mild haemophiliac who was infected with hepatitis C at 14 years of age, following a fall from a horse. His parents were not warned of the risk of the new factor VIII. Leigh’s parents were not told that the new treatment of factor VIII concentrate contained blood donations from up to 20,000 donors. Only one donor with hepatitis C or HIV would be enough to contaminate the whole batch. Leigh’s first treatment with factor VIII infected him with hepatitis C, a lethal virus that destroyed his liver and killed him at the age of 44. Leigh worked up until the year before he died. He trained as a mechanic and bought his own garage and built up a successful business to support his two young daughters. The stigma attached to hepatitis C meant that he didn’t tell anyone, not even his business partner, and when he became ill, he continued to keep this secret. Leigh was diagnosed with liver cancer and spent the last years of his life in intense pain and suffering. He died in June 2010. His brother was also infected with hepatitis C at the same time and underwent a liver transplant last year. Leigh’s parents will never recover and our family’s been torn apart by contaminated blood. We hope that by getting to the truth we will get closure and understand why this was allowed to happen.’
Well, as we’ve heard, in the 1970s and 1980s, blood products supplied to patients by the NHS were contaminated with HIV or hepatitis C. Around 4,670 patients with haemophilia blood-clotting disorder were infected, over 2,000 have since died in the UK with, as we heard, 70 in Wales, from the effects of these viruses. Successive UK Governments have since refused to hold a public inquiry into these events. The 2009 independent inquiry under Lord Archer made strong recommendations to Government, some of which have been implemented.
In 2008, the Scottish Government set up a public inquiry under Lord Penrose. Following publication of the final report of the Penrose inquiry in March 2015, David Cameron did apologise for the contamination disaster and promised to improve financial support. Nicola Sturgeon also apologised and, following a full consultation with those affected there, announced a new Scottish scheme focusing on those most in need. The Scottish scheme offers improved payments to those with more advanced HIV and hepatitis C, addresses those in most urgent financial need and, for the first time, widows there are entitled to regular payments and will no longer be forced to apply for means-tested discretionary support, offering some security via annual payments of about £20,000. In England, widows will only have a one-off payment of £10,000.
Currently, the UK Government provides partial support to some individuals and families through various charitable trusts funded by the Department of Health. Following a 2016 consultation, the UK Government announced a support package of £125 million to improve support for victims in England, with devolved administrations taking responsibility for future schemes and payments in their own nations.
In October 2016, the Cabinet Secretary for Health, Well-being and Sport here announced, as an interim measure, payments for the remainder of the 2016-17 financial year at the same levels as England, adding,
‘However those affected may have ideas about how this money can best be used to assist them in everyday living and planning for the future. To inform our future arrangements, I am now seeking further views on a new scheme from April 2017’.
The Irish Republic scheme is widely heralded by victims as the best model, offering a choice of a one-off payment or ongoing payments, life assurance and mortgage protection, and a health amendment card that ensures access to treatment and support.
Referring to
‘this absolutely tragic situation for all involved’— their words—Cruse Bereavement Care told me that
‘People have been living with this for 30-40 years. Given the stigma around blood disorders, family members have to deal with the reactions that come with it. In some cases this manifests itself in a sense of needing to feel justified and to have pain recognised—privately as well as publicly. Broadly, when Cruse is able to offer bereavement support, we find that the bereaved experience is that there can be more unanswered questions for longer, which can have a profound effect upon people who have been bereaved. Unfortunately, we also see this in suicides or cases when suicide or foul play is suspected, but the family/friends are never entirely sure. The unknown element can be caustic and can result in people entering into cyclical thinking about what might have or actually happened. Our past is important to us, and this gives us some of our identity. With significant unknowns present such as this, it can leave people feeling unstuck.’
Let me briefly quote—to add to the examples given—Monica Summers, whose husband, Paul, and contaminated blood bank victim, died on 16 December 2008, aged 44. Their daughter was five years old. Monica says,
‘Every day for 18 months she asked “when is daddy coming home?” She turned 13 years in October and we both struggle. My husband didn’t have a choice, it was made for him and he lost his life because of decisions taken by others. Yet over 30 years later we are still trying to get some agreement. Please let the next decisions be made by voices of people who are currently suffering with HIV and Hepatitis C, by the widows and families left behind trying to heal and build a new normal life.’
Contaminated blood has had, and continues to have, a devastating impact on the lives of thousands of people with haemophilia and their families. Those infected live with the health effects of viruses, with more deaths each year. As Haemophilia Wales states,
‘A Public Inquiry is the only way forward to get to the truth about the State’s mishandling of these events.’
Dirprwy Lywydd, this is less a debate today and more a call for action. We are calling on the Government to act on behalf of those who seek justice for themselves and for their families.
In her opening contribution, Julie Morgan mentioned a constituent of our colleague, Mick Antoniw—Mr Leigh Sugar—who passed away from hepatitis C. Mr Sugar’s aunt is a constituent of mine—Mrs Dorothy Woodward. She has expressed to me her hope that the Welsh Government will do the right thing today and recognise the impact this tragedy has had on the lives of all the families affected. It’s good to see the Cabinet Secretary for Health, Well-being and Sport there to listen to that plea.
I’d also like to speak about the stories of two more of my constituents, who contacted me ahead of the debate today. Mr Kirk Ellis is 35 years old. He has haemophilia and he was infected with hepatitis C at just two years of age. Kirk has continued to work, even when undergoing various chemotherapy-type treatments to eradicate hepatitis C. He’s had such severe side effects that it has forced him to stop treatment purely because it made him unable to work, and he couldn’t afford not to work. Unfortunately, Kirk has been recently informed that he has cirrhosis of the liver, caused by hepatitis C. His disease has not been adequately monitored as there have been delays with the appointment of a consultant hepatologist at the University Hospital of Wales, Cardiff. Kirk had been overlooked, and when he was eventually seen by the newly appointed hepatologist, it was confirmed that he had had cirrhosis as early as May 2015. Unaware of the deterioration in his liver, Kirk and his partner decided to start a family, and they now have a 15-week-old baby. Since his diagnosis, Kirk has continued to work but has lost his disability living allowance and his housing benefit. He feels that he is being penalised for trying to stay at work despite being ill with the side-effects of treatment.
Another of my constituents got in touch to tell me the tragic story of how his family had been affected. His younger twin brothers were infected with HIV and hepatitis C by contaminated blood transfusions supplied by the NHS to treat haemophilia. After many years of terrible illness, they succumbed to the effects of HIV. My constituent’s brothers suffered discrimination, as well as verbal and physical abuse to—and he put this in quotes—’having AIDS’. Their mother never recovered from the death of her youngest sons and lived in her final years with depression. It’s been very difficult for him to contact me and speak about this, but he expressed to me his hope that the personal stories of all the affected families will help to finally achieve some closure on this matter, which is why the names have been on the screen today of those who’ve passed, and why I’m telling these stories.
These are just two examples from people in Caerphilly. Can any of us imagine how this must affect people who are suffering through absolutely no fault of their own? It’s a grave injustice, and it’s absolutely essential that the UK Government holds a full public inquiry into why this has happened. It’s not a party-political issue. The inquiry needs to be UK wide, as these events happened prior to devolution and occurred in all corners of the UK.
I know that the Cabinet Secretary has recently finished consulting on the sustainable compensation package for people in Wales who’ve been affected by this tragedy. I would urge him to listen to their views as much as possible, and their stories, when putting his plans in place.
Kirk Ellis feels strongly that Wales needs to adopt a compensation scheme similar to that in Scotland so that his family can support themselves should anything happen to him. Many of those in Wales living with the effects of this tragedy do not feel that the current compensation scheme, which mirrors that in England, goes far enough. I hope that, today, we as Assembly Members have given a voice to constituents who’ve been affected by this terrible tragedy.
It’s a pleasure to participate in this important debate this afternoon. There is unanimity on this issue. May I start by acknowledging the work of the cross-party group here in the Assembly, chaired by Julie Morgan? I thank her for her opening remarks. Of course, I also thank Haemophilia Wales and Lynne Kelly for all the support that they’ve provided and their very strong evidence, their very passionate evidence, provided in the meetings that we have attended over these past few months.
Efallai fy mod wedi sôn o’r blaen wrth fynd heibio fy mod wedi bod yn feddyg teulu yn Abertawe dros y 32 mlynedd diwethaf.
‘Cynhyrchion gwaed a fewnforiwyd o’r Unol Daleithiau sydd wedi achosi’r problemau. Tuedda cynhyrchion gwaed yr Unol Daleithiau ddod o garchardai. At hyn, caiff pobl eu talu am gyfrannu gwaed yn yr Unol Daleithiau, ac felly mae grwpiau perygl uchel, megis rhai sydd yn gaeth i gyffuriau, yn tueddu i gymryd rhan. Ni fu unrhyw un o Lywodraethau’r DU yn hunan-gynhaliol o ran cynhyrchion gwaed. Addewidwyd y nod hwnnw gyntaf yn 1945, ond nid ydym wedi ei gyflawni o hyd. Mae hepatitis C yn gyflwr arwyddocáol ac ni ddylid ei ddiystyru fel mân haint. Gall ymosod ar yr iau, a gallai fygwth bywyd. Gall hyd at 80 y cant o’r sawl a heintiwyd ddatblygu afiechyd iau cronig, gall hyd at 25 y cant, yn ôl rhai astudiaethau, ddatblygu sirosis yr iau, ac mae perygl y gall hyd at 5 y cant ddatblygu canser yr iau.’
Mae angen diweddaru rhywfaint o’r wybodaeth honno, gan mai’r tro cyntaf i’r geiriau hynny gael eu clywed oedd gan fy nghyd-Aelodau Cynulliad ar y pryd pan gynheliais ddadl fer yn y Cynulliad ar 8 Mawrth 2001—8 Mawrth 2001. Yr un mater—ymchwiliad cyhoeddus, iawndal. Mae ein pobl yn dal i ddioddef. Roeddwn yn cymryd tystiolaeth bryd hynny gan bobl sydd wedi marw bellach, yn anffodus—Haydn Lewis, Gareth Lewis—roeddent yn rhan o’r ymgyrch, a siaradais yn hir â hwy. Dyna oedd ffrwyth y ddadl rwyf newydd ei dyfynnu o’r Cofnod 16 mlynedd yn ôl. Nid oes dim wedi newid i’r bobl ar lawr gwlad yma yng Nghymru ac mewn rhannau eraill o’r Deyrnas Unedig. Jane Hutt oedd y Gweinidog Iechyd ar y pryd, ac fe atebodd fedrus. Roeddem mewn Siambr wahanol. Mae’r ddadl yr un fath, sy’n ddigon i’ch gwylltio—yr un fath. Rydym wedi clywed hanes ymchwiliad Archer. Rydym wedi clywed am yr holl anghyfiawnder sy’n mudferwi. Oherwydd mae hwn yn anghyfiawnder sy’n mudferwi. Mae’n rhaid i ni gael yr ymchwiliad cyhoeddus llawn hwnnw. Mae’n gywilyddus fod Llywodraeth y Deyrnas Unedig wedi osgoi’r mater, wedi gwrthod mynediad at bapurau, gan obeithio y bydd y mater yn diflannu a bod pobl yn marw. Nid dyna’r ffordd i redeg llywodraeth yn y Deyrnas Unedig. Mae gennym i gyd hanesion am deuluoedd sy’n dioddef: gweddwon ifanc gyda phlant ifanc mewn tlodi am fod y tad wedi marw yn anffodus o ifanc oherwydd cynhyrchion gwaed halogedig fel person hemoffilig; pobl sy’n byw gyda hepatitis C, nad ydynt yn ffit i weithio—cosb gydol oes o flinder ac anhwylder aruthrol ac eithafol—ynghyd â’r risgiau y soniais amdanynt bron i 16 mlynedd yn ôl yma. Ni allwch gael sicrwydd yswiriant bywyd na diogelu morgais, ac eto ni allwch ychwaith gael iawndal digonol yn sgil rhywbeth nad yw’n fai arnoch chi. Rydym yn llusgo ar ôl yr Alban, rydym yn sicr yn llusgo ar ôl Gweriniaeth Iwerddon—buom yn siarad am yr angen am iawndal yma i’n pobl yng Nghymru ers blynyddoedd. Rydym yn disgwyl i Ysgrifennydd y Cabinet newid y sefyllfa honno, gan fod gennym bobl sy’n byw mewn tlodi heb fod unrhyw fai arnynt hwy.
Felly, mae angen i ni roi iawndal digonol i deuluoedd. Rwy’n dweud wrth Lywodraeth y Deyrnas Unedig: mae’n hen bryd i hyn ddigwydd, mae’n hen bryd sicrhau cyfiawnder—cynhaliwch ymchwiliad cyhoeddus llawn i drasiedi cynhyrchion gwaed halogedig. Nid yw ‘sgandal’ yn air rhy gryf. Mae anferthedd y dioddefaint wedi mynd heb ei gydnabod yn rhy hir—mae’n enfawr.
Rwy’n falch o gymryd rhan yn y ddadl hon heddiw, fel yr oeddwn yn falch 16 mlynedd yn ôl i gymryd rhan mewn dadl debyg. Cynhaliwch yr ymchwiliad cyhoeddus hwnnw yn awr. Diolch yn fawr.
As has already been said this afternoon, there are many people in Wales who have been infected with either HIV or hepatitis C as a consequence of contaminated blood products, which came to them as treatment, and, as Hefin David pointed out, on many occasions as young children. Sadly, many of those infected have passed away. The pain of the families that have lost loved ones has not gone away, but neither has the stigma or the suffering of those still living with illness as they continue to face the challenges of the lives ahead of them.
As has been pointed out, during the 1970s and 1980s, in Lord Archer of Sandwell’s inquiry, which was an independent inquiry—. As he stated, the Department of Health favoured commercial interests and costs to the detriment of public safety, and the UK was slow to react to the dangers of HIV and hepatitis C. It was also slow to become self-sufficient in blood and blood products, relying very much on buying in those products, particularly from America. We all understand that, in America, of course, blood was collected by way of monetary payment for the giving of blood on many occasions—it was not as it is today.
Dirprwy Lywydd, as has already been pointed out, I want to highlight the impact on one of my constituents, David Farrugia. His father, Barry, and two uncles, all received contaminated factor VIII used to treat haemophilia. The consequences of this were that his father and one of the uncles became HIV positive and subsequently went on to contract AIDS, and the other uncle contracted hepatitis C. At different times, unfortunately, all three sadly passed away—from 1986 up to 2012.
However, the pain and the stigma the family experienced and continue to experience—they continue to suffer today, even though their loved ones have passed away. Days after the death of their father, Mr Farrugia’s sons were separated, and two of them—twins—were actually sent to care homes 100 miles apart. But, before they could be admitted to the care homes, the care homes insisted on a blood test to ensure that they weren’t contaminated. Now, that is something that is unacceptable. What effect does that have on anyone going there, let alone a child who’s just lost his parent? It is unacceptable behaviour from the public sector.
There were four brothers in total, and they were not reunited for over 20 years. That is the emotional and psychological impact of the death of a loved one from contaminated blood products, and the actions that occurred to them after that totally need to be addressed.
Dirprwy Lywydd, I’ve got to declare a personal interest, as I actually have a nephew who suffers from haemophilia and was infected by contaminated blood in the USA. He is an American citizen, so he’s not going to be affected or impacted upon by anything we do here today. But the challenges he faces, and he has faced, continue, and they’re the same challenges that face people in Wales today.
In the US, there was federal action to support those infected by contaminated blood. Similar actions should be taken across the whole of the UK. I am concerned that the UK Government is not even considering an inquiry into the use of contaminated blood and blood products. Actually, the then UK public health Minister, Jane Ellison, wrote to my colleague, MP for Aberafan, Stephen Kinnock, in January 2016, stating:
‘Another inquiry would not be in the best interests of sufferers and their families as it would be costly and further delay action to address their concerns and significantly delay plans to reform existing payment support schemes.’
That is simply not good enough. Those families and those sufferers want answers as to how they and their loved ones were infected. A consideration that it wouldn’t impact upon them, I’m sorry, is unacceptable to any politician who’s really concerned about the lives of their individuals and the people in Wales. The UK Government has a moral responsibility to provide them with answers, and it must meet its obligation to provide support, including compensation to those infected and their families. There are key issues the Department of Health need to address around liability and parity of support schemes across the home nations. And it’s already been heard—I think Mark Isherwood has quite clearly identified the schemes across the UK—and I think there is a requirement for more certainty for people here in Wales.
Perhaps the minimum certainty should be in line with the recommended payments identified by the Archer inquiry, which has already been implemented in southern Ireland. And Scotland’s system introduced to talk about supporting widows—perhaps we in Wales go one further, in supporting bereaved families, because there are children who are dependents of individuals who have been lost. We have seen families break up as a consequence of contaminated blood and the infections created because of them. What happens to the children of those families? We perhaps can go further than just individual support, and widows’ support, and help the families as well. The whole system seems to be designed to make you feel like a beggar. It’s not acceptable—no-one should have to beg to receive support that we as Governments should be providing for them without complication, and I urge the Welsh Government to take this matter up as a matter of importance and urgency with the UK Government.
I’d like to thank Julie, Dai, Rhun, Mark, Hefin and Jenny for tabling this individual Member’s debate and for giving us all the opportunity to discuss this very important topic. The contaminated blood scandal is one of the darkest periods in the history of our NHS. The fact that people who sought help from the health service were exposed to deadly viruses is shocking enough, but the fact that they have been denied a proper explanation as to how this was allowed to happen is inexcusable. The previous UK Government did apologise to patients infected by contaminated blood and their families, but they were still denied a full, independent public inquiry.
Successive Governments have monumentally failed to address the concerns of the victims of the contaminated blood scandal. In comparison, following pressure from the Scottish Parliament’s health committee, the newly elected SNP Government in 2008 ordered a full public inquiry into the infection of people with hepatitis C and HIV contracted from NHS treatment. The inquiry began in 2009 and published its final report in March 2015. The report spans five volumes and runs to over 1,800 pages, having considered the treatment of bleeding disorders and blood transfusions in Scotland between 1974 and 1991.
The people of Wales deserve no less. We need a full, independent inquiry covering the use of blood and blood products in the Welsh NHS. Seventy people have died in Wales as a result of the contaminated blood scandal and numerous others are living with diseases they acquired as a result of the treatment they received. However, we don’t know how many others have received treatment, contracted an infection, but remain undiagnosed. The Scottish inquiry recommended that everyone who received a blood transfusion before September 1991 be tested for hepatitis C. That’s the purpose of such inquiries: to establish the facts, to make recommendations and to ensure that lessons are learnt so that we don’t make the same mistakes again.
We need to establish the facts of what went on in our health service during the 1970s, 1980s and 1990s. These families deserve an explanation. How was a large American pharmaceutical company allowed to collect blood from prisoners in America and from the third world without any testing of the donors? How were the products produced from this blood licensed? Were products produced by this company still used in Welsh hospitals after they were withdrawn from the US? Have we learned anything from this dark period in the NHS’s history and are we sure that something like this could never, ever happen again? Only a full, independent public inquiry can address these questions. Only a full, independent public inquiry can provide answers to the victims of this scandal. And only a full, independent public inquiry can provide closure for those who have sadly passed away, and their families, as a result of receiving this contaminated blood. I urge the Welsh Government and the UK Government to work together to do the right thing and order such an inquiry while many of the victims are still with us. Thank you very much. Diolch yn fawr.
I would like to start today by thanking the Members in whose name this motion appears on today’s agenda. This is a very important subject, where we have the opportunity to call for redress for those lives touched by the contaminated blood tragedy. For my contribution today, I would like to focus on the stories of two of my constituents who were affected in this way. The first story is from a constituent who, understandably, wishes to remain nameless. He says:
‘I was 17 years old and ready to start my life when I was told by my Haemophilia Doctor that I had HIV, I was told not to tell anyone, not even my mother. They told me I would live about 18 months. I had seen AIDS victims on the TV and so I thought I would die in the same way. This was a death sentence, I signed myself out of hospital and started taking sleeping tablets, as when I was asleep I wasn’t thinking about the reality of what was happening. During the next few years I took more and more sleeping pills, morphine and pethidine, in fact anything to numb the effect and stop the mental torture. I would take 5 or 6 at a time, up to 90 a week. I had a nervous breakdown and was admitted to Whitchurch Psychiatric hospital and tried to kick the habit. For years I spent spells in and out of hospital where I witnessed other Haemophiliacs I had known dying from AIDS. One such victim Mathew was a young man who was a couple of years younger than me and looked up to me, he was going to die imminently and I was asked to stay in hospital a few days longer by the Haemophilia doctors until he died. I had become an addict to sleeping tablets and pain killers and my doctor stopped them all one day, I was climbing the walls as I was given no help, I broke into the local pharmacy to try and get tablets to numb the pain. I attempted suicide many times, my mother witnessed all of this.
‘In 1994 I was told that I was also infected with Hepatitis C, I underwent many courses of treatment with horrendous side effects and eventually was clear of the virus 3 years ago. I was told that I had cirrhosis due to Hepatitis C but I have been refused stage 2 ongoing payments from the Skipton Fund. All my life I haven’t been able to get life assurance or mortgage protection due to HIV and Hepatitis C. I live day to day, I met my wife over 20 years ago, we would like to have some recognition of what has happened to me and how my life has been ruined. We would like financial support to offer us some degree of security. Instead we have to make applications for means tested support which is usually turned down.’
The second story is from my constituent Jeff Meaden, who I’ve been in correspondence with for some months. Jeff writes movingly about his much-loved wife Pat. Patricia Meaden died of liver cancer and liver failure in January 2014. Pat had contracted hepatitis C through treatment she had received for a blood clotting disorder. She was ill for most of 2013 but wasn’t referred for a liver transplant and developed liver cancer. Her widower Jeff says:
‘We lived in the same street as children and played together as children. We first went out together when we were 14, her death was so unnecessary, I am broken hearted. My wife would have been alive it if hadn’t been for Hepatitis C, it has ruined our lives and nobody is taking any responsibility for it.’
The stories of my unnamed constituent and Pat Meaden highlight some of the ways in which lives have been changed as a result of the contaminated blood scandal: the psychological impact; addiction to medication; suicide attempts; refusal of life assurance or mortgage protection; financial insecurity; and death. But their stories also highlight the way the contaminated blood scandal has affected those around them and I am glad that this aspect has also been touched upon in the motion today. I have no hesitation in supporting this motion today and its call for justice. Thank you.
I welcome this opportunity to contribute to the case for recognition of this contaminated blood scandal and tragedy and its ongoing consequences to support the campaign for justice by affected families and Haemophilia Wales and the need for full answers as to how it was allowed to happen. Dirprwy Lywydd, my constituent Lynn Ashcroft’s husband, Bill Dumbelton, was a haemophiliac and one of the first to treat himself at home with cryoprecipitate. As a result of contamination, he contracted HIV and hepatitis C and died aged 49, leaving her a widow at 35. Bill had no life insurance: he could not get any as a haemophiliac. Lynn was left to cope with the mortgage and all the other financial pressures. She found available support inadequate and dispiriting and believes the UK Government should ensure financial security for survivors. Lynn says the UK Government has no conscience and has lost the plot. She does not want the one-off £10,000 payment on offer, which she considers insulting.
My constituents Janet and Colin Smith’s lives were torn apart by the death of their son, Colin. Little Colin was a haemophiliac and given a batch of contaminated blood product in the middle of the AIDS crisis. At age 7, after years of suffering, he died in his mother’s arms weighing 13 pounds. Colin and Janet think Little Colin knew he was going to die. He told his brothers they could have his toys. He obviously knew they would get to use them for longer than he would and he had turned to his brother Daniel and said, ‘You will miss me, you know.’ And Daniel does miss him, as do his other brothers, Patrick and Darren. Dirprwy Lywydd, the family have been denied answers as to why the provision of contaminated product was allowed to happen. It was, in fact, a freedom of information request that revealed the blood was from a prison in Arkansas and it wasn’t until three years after his death that Colin’s parents discovered he had hepatitis C. That had been kept secret from them. They continue to be ignored and feel strongly that they have to continue to fight for justice for Little Colin and everybody else affected by this tragedy.
Dirprwy Lywydd, families and Haemophilia Wales have now been waiting some 30 to 40 years for the truth and they are crystal clear: they need a public inquiry to get that truth.
I now call on the Cabinet Secretary for Health, Well-being and Sport, Vaughan Gething.
Thank you, Deputy Presiding Officer. I want to begin by thanking Julie Morgan as chair, cross-party group members and all of those who’ve contributed to today’s debate. There’s been powerful testimony from all sides, not just about the injustice and unfairness, but in particular about the impact on individuals and families, whether that’s the impact on work, the ability to get insurance, but also the stigma that goes with contaminated blood and the shame that people feel. Whether they’re right to feel shame is an entirely different thing—I don’t think they should be ashamed at all—but it’s how people really do feel and how it’s impacted on their lives. And then, of course, there are the other medical problems, especially those mental health problems. So, I want to say at the outset that I strongly support the call for the Government to hold a UK-wide public inquiry into the circumstances that led to people contracting hepatitis C, HIV or both from NHS-supplied contaminated blood products. I know this has been described as some of the worst treatment in the history of the NHS. People were infected by NHS treatment and it should never have been allowed to happen, but it did and I am truly sorry about the harm that has been caused and the impact this has had and continues to have on those affected.
The impact of those infections on people’s health and well-being has been hugely significant and highlighted again in the Chamber today, with wide-reaching consequences for lives, dreams and aspirations. And, of course, some have lost their lives permanently, as Julie Morgan outlined in opening the debate. I have had the opportunity to hear first-hand, both in the cross-party group but also in private ministerial meetings, about the views of affected individuals and their families, including representatives of Haemophilia Wales and Assembly Members. I’ve been further informed by feedback I’ve had from Welsh Government officials following the recent workshops that they held with those affected to help inform our future direction in Wales on the financial support that we will be able to provide.
What is clear to me and everyone in this Chamber who has listened is the incredible strength of feeling about what happened, and a plain and simple demand to know all the circumstances and facts about what happened. And I support them in that demand, because I know that they seek closure in order to be able to move on. And the calls for a public inquiry over many years across more than one Government by those campaigning have been ignored. To many, we understand that this has added insult to injury. I certainly believe that a full and independent investigation into the circumstances is right and appropriate. In October last year, I wrote to Lord Prior following the Prime Minister’s commitment to consider a review into the issue of contaminated blood, and I asked how the devolved administrations would be engaged. I then wrote to Jeremy Hunt on 20 December adding my voice to the call for a UK-wide public inquiry. And it’s clear that that inquiry can only take place if the UK Government acts. It’s not just because these events took place before devolution. It’s not just because we can’t always know where people were infected. But, of course, only the UK Government has access to the information and the powers for the scope and depth of an inquiry that is required for a meaningful inquiry to help people get to the truth.
It is also true, though, that the scandal was not unique to the UK. What is different, though, is that in some other countries like Ireland and Canada, their governments have instigated those inquiries. I do accept that no inquiry can repair the damage that has been done, but it can ensure that we fully understand in a transparent way how the events of this catastrophe were able to happen. It is important, as well as ensuring those who have been so directly affected by the tragedy know, that we also ensure that we take any learning to help prevent any such thing happening in the future.
Caroline Jones asked directly: have we learned anything? The truth is we have, actually, because if you look at blood products here in Wales, the safety has significantly improved in terms of traceability and testing. I’ve seen some of those systems in place, and the safeguards on visits that I’ve made to the Welsh Blood Service. But that does not get away from the fundamental injustice for those people who have been infected.
As people are aware—and, of course, as was mentioned in the debate—work is under way to reform the system of financial support provided by the Welsh Government. We would have preferred to have done this on a consistent UK-wide basis, but this is where we are. The five infection-specific schemes established since 1988 have evolved in an ad hoc manner, and over time the system has become complex. Some improvements have been made pre and post devolution, such as the introduction in 2009 of annual payments for those with HIV and annual payments for those most severely affected by hepatitis C from 2011.
However, there is widespread dissatisfaction that continues about the way and the extent to which people affected are supported. In reforming support for those affected who will fall within the responsibility of the Wales scheme, I have three priorities. Any move to a new system has to be equitable and operate transparently. Improvements need to be affordable and sustainable within the health budget, and decisions will need to take account of the views expressed by those affected.
So, in October last year I wrote to individuals inviting them to complete a survey to let me have their views on how best to provide support and how it could be tailored better to meet their needs. My officials also held two workshops, one in north Wales and one in south Wales. This overall process has proved invaluable in gaining first-hand the impact of the tragedy on people’s lives and those of their families in many cases. The survey closed on 20 January and I will consider carefully the information and the views that are expressed to me in making a decision of a path forward. Of course, there has been some more money allocated within this year’s final budget. But it will be a difficult task on the way forward and I know perfectly well I will probably not be able to satisfy all of the demands—and understandable demands—that families will want to make upon me and this Government. But I will be completely transparent about any decision I make, how I’ve made it and what I’m able to do to help support families here in Wales. So, I’ll be considering those issues carefully when making a decision on the way forward for Wales.
But I want to finish—because the essential call in today’s debate has been about truth and a way forward—and I absolutely believe it is right and proper that people have answers to their questions about how and why people were infected as well as receiving appropriate support in helping to live with the impact that this tragedy has had and will continue to have.
Thank you. I call on Rhun ap Iorwerth to reply to the debate.
Thank you very much, Deputy Presiding Officer. I’d like to thank everyone who has contributed to this debate this afternoon. I’ll thank also some who haven’t had the opportunity in this afternoon’s debate to express their opinion on record. I’ll name Jenny Rathbone, of course, who’s one who’s signed this motion and who is here in the Chamber supporting this 100 per cent, this motion before us. Can I also thank the Cabinet Secretary for his positive response to the specific call that’s being made by us today? But my thanks goes mainly to the individuals and the families who have lived with this injustice for so long, and the families of those who have lost their lives, and for their dignity and resilience in pressing on us to ensure that they, hopefully, will be able to have justice.
Mae’r holl Aelodau heddiw wedi dweud wrthym am brofiadau go iawn etholwyr, ffrindiau, aelodau o’r teulu, hyd yn oed—maent wedi adrodd am brofiadau dirdynnol sy’n dangos yn glir i ni pam rydym yn mynnu’r camau hyn. Cyflwynodd Julie Morgan yr achos dros ymchwiliad yn huawdl. Disgrifiodd Mark Isherwood raddfa’r drasiedi, y sgandal hon, ledled y DU, ac annigonolrwydd y cynllun iawndal. Cawsom ein hatgoffa gan Dai Rees am y stigma sy’n cydredeg ochr yn ochr â salwch. Fe’n hatgoffwyd gan Dai Lloyd fod 16 mlynedd ers i’r Cynulliad drafod yr union fater hwn ac rydym yn dal i aros am gamau gweithredu. A chrynhodd Hefin David ein bwriad yn eithaf syml heddiw fel galwad i weithredu. Mae’r alwad honno’n alwad syml iawn.
What we’re demanding this afternoon is very simple indeed. As we’ve heard, 283 people in Wales were infected with hepatitis C or HIV because of contaminated blood in the 1970s and 1980s. Seventy of those have now passed away. Their names are once again on the screens around this Chamber, and behind every name, there is an individual who had to live a life suffering both illness and stigma, through no fault of their own. And behind every name, there is also a family who have had to grieve, through no fault of their own.
In the cross-party group on contaminated blood, we’ve heard some powerful descriptions of the experiences of victims and their families, not only the physical impacts of the infection, but also the psychological impacts on them, their families and friends, about the prejudice of people when they told them that they had HIV or hepatitis C, and the guilt felt by many of them who had infected husbands, wives or even babies, unbeknown to them. Because of that, factors such as these, many have decided to suffer in silence. But, to intensify that suffering, Government after Government has also chosen to remain silent and refused to get to the heart of exactly what went wrong and why. Victims and their families deserve to know and they deserve justice.
One of the outcomes of this absence of answers, the absence of a perception of what went wrong, is the striking problem, as we’ve heard from many Members, in terms of the compensation packages provided. These demands for an inquiry today don’t replace calls for improved compensation packages for victims. I’m sure the Cabinet Secretary hears my comments on that. Certainly—
Will you take an intervention?
[Continues.]—a full public inquiry shouldn’t be any reason for the Government to delay, any further, coming to a just settlement for those people who have suffered. I will of course take the intervention.
Would you agree with me that what is needed is a full and effective public inquiry, similar to the one that Charles Hendry conducted into the tidal lagoon, not one that takes six years and comes up with one limp recommendation, as happened in Scotland? We need a full public inquiry, so that we know that the NHS is a learning organisation and has learnt from the dreadful mistakes that were made.
I’m grateful to the Member for making that intervention, and she’s absolutely right, of course, that what we want is a full, a complete, inquiry. We’ve waited long enough to get the answers to the questions that we ask. I’m grateful that that point has been made. Inquiries that we have seen in Scotland have been useful in terms of the compensation structure, but it’s not enough in itself.
Yn dilyn ymchwiliad Penrose yn yr Alban yn 2005, mi gyflwynodd Llywodraeth yr SNP system newydd well a thecach o gefnogaeth ariannol, am eu bod nhw’n credu bod gan Lywodraeth yr Alban gyfrifoldeb moesol i wneud hynny. Gadewch i ni yma hefyd gefnogi galwadau am ymchwiliad, ond un llawnach, fel cam tuag at roi’r gefnogaeth haeddiannol i ddioddefwyr yng Nghymru hefyd, yn ogystal â’u teuluoedd.
Gadewch imi ddyfynnu un o’m hetholwyr i, sydd â’i wraig, Jennifer, yn dioddef o hepatitis C. Mi gafodd ei heintio yn y 1970au. Dyma a ddywedodd o:
‘In the 14 years since she has become ill, she’s been unable to do most of the things she did before. In the early days, she was so debilitated that she could not cook; could walk only a short distance; could not drive; found it difficult to understand basic things; she needed help washing and dressing. She has improved slowly, but 12 years later, she still suffers from chronic fatigue, usually spending most afternoons asleep. She cannot cope with day-to-day housework and cooking, but she tries to do some, often making mistakes.’
Crucially, he says:
‘In her words, she never has a good day; just bad or very bad’.
I’ve met Jennifer and her husband on a number of occasions. I’ve been struck by their dignity; dignity in the face of what they have had to endure in terms of their health and in the face of an unjust compensation structure, and of too many unanswered questions. Seventy of the 283 contaminated in Wales are no longer with us. You’ve seen their names in the Chamber today. We owe it to them and we owe it to all those still living with the consequences of the contaminated blood scandal to seek answers, once and for all. For justice, support today’s motion.
Thank you. The proposal is to agree the motion. Does any Member object? No. Therefore, the motion is agreed in accordance with Standing Order 12.36.