3. Debate: The Infected Blood Inquiry Report

– in the Senedd at on 4 June 2024.

Alert me about debates like this

(Translated)

The following amendments have been selected: amendments 1, 2 and 3 in the name of Heledd Fychan.

Photo of David Rees David Rees Labour 2:47, 4 June 2024

(Translated)

Next, we have item 3, the debate on the infected blood inquiry report. I call on the Cabinet Secretary for Health and Social Care to move the motion. Eluned Morgan.

(Translated)

Motion NNDM8595 Jane Hutt

To propose that the Senedd:

1. Recognises:

a) the harm and suffering caused to thousands of people in the worst treatment scandal in the history of the NHS;

b) the tireless campaign and hard work of all those infected and affected to seek the truth; and

c) the UK Government’s apology for the decades-long moral failure at the heart of our national life.

2. Welcomes the final report of the Infected Blood Inquiry published on 20 May 2024 and its recommendations.

3. Welcomes the four-nations work to put in place an Infected Blood Compensation Authority.

4. Notes that further compensation payments will be made to people infected and affected by the scandal.

(Translated)

Motion moved.

Photo of Baroness Mair Eluned Morgan Baroness Mair Eluned Morgan Labour 2:48, 4 June 2024

Diolch yn fawr, Dirprwy Lywydd. Thank you for the opportunity to have this debate today, following the publication of the infected blood inquiry's final report last month. I want to be clear: this was the worst treatment scandal in the history of the NHS. While it predated devolution, as the Cabinet Secretary for Health and Social Care in Wales, I want to apologise to all those who were infected and have been affected by this terrible tragedy. I want to pay tribute to the infected and affected, some of whom I met earlier today and are in the gallery this afternoon to listen to this debate. There's been so much suffering by so many people. They fought for decades for the truth to be told, and they must be commended for this. 

I've just met some of those victims and heard their stories: Tony and Pat Summers, fighting for justice for decades for their son, Paul; Rose, who lost her brother in 1990, aged 44; Suzanne, setting out how her mother was a tiny bit anaemic and received tainted blood from a service that was supposed to heal her but ended up killing her and depriving her of the opportunity of meeting her nine great-grandchildren; the harrowing story I heard from Margaret Sugar about how her son Lee suffered and how her son Craig is still paying a price; Joanne, who explained how her brother-in-law was ostracised in school because he had HIV and the school failed to keep it private; Kirk, who is still suffering and is determined to ensure justice is done; Sharon and Ceri, whose father died and nobody told them he had a hepatoma; Ruth, whose husband died in 1989, and wasn’t told he had hep C. They’ve all fought for decades for the truth to be told.

The culmination of the infected blood inquiry on 20 May and Sir Brian Langstaff’s recommendations provided them with many of the answers to so many of the questions they’ve been asking for so long. The sense of vindication and relief is palpable. But so too is the anger that this was ever allowed to happen. I want to thank the members of the cross-party group who have also supported the victims and campaigned for a UK inquiry to take place. I want to pay a special tribute to Julie Morgan, who has worked tirelessly for many, many decades with Haemophilia Wales, helping people like Tony Lane. I also want to pay tribute to the chair, Lynne Kelly. Together, they’ve fought for the inquiry, they’ve lobbied for ex-gratia payments, for parity and a compensation package.

Dirprwy Lywydd, following the conclusion of the infected blood inquiry and the publication of the final report, we’ve already started work to consider its recommendations. We’ve set up an infected blood inquiry next steps for Wales group, chaired by our new deputy chief medical officer, Dr Push Mangat, and it will meet for the very first time soon. It will work with health boards, the Welsh Blood Service, Public Health Wales and policy officials to ensure we look at the wrongs of the past and work together to ensure this can never happen again. There are some issues we can and we will progress quickly; others will take more time. I’ll report back to Members as this work progresses.

I met John Glen, the responsible Cabinet Office Minister, just after the general election was announced, and said the Welsh Government will continue to work on a four-nations basis to implement improvements across the UK. In response, he told me that the election would not hold the work up. Members will recall that this Senedd gave its consent to the provisions in the UK Victims and Prisoners Bill to establish the new compensation arrangements for people infected and affected. The Victims and Prisoners Bill was approved by the UK Parliament as part of the wash-up process, and has now received Royal Assent. This means the new infected blood compensation authority will be formally set up and payments will be made.

Compensation is a matter for and will be funded by the UK Government, but my officials will continue to work with their counterparts in Whitehall to ensure there is a smooth transition for beneficiaries to the new arrangements. Those people who were infected and affected will rightly be able to claim compensation and we will assist them in this process. We’ll also do all we can to ensure that all those eligible for further interim compensation payments receive it as quickly as possible. A second interim payment to those living beneficiaries who are registered on a support scheme will be made within 90 days. Further interim payments will be made to the estates of those registered who were infected and the Wales infected blood support scheme will continue to make ex-gratia payments to provide welfare and psychological support until the transition is complete.

Sir Robert Francis, who wrote the compensation report for the Cabinet Office, will be holding a series of engagement events over the summer about the compensation package put forward by the UK Government. This will help ensure those able to make claims have the correct information and, where necessary, have their views heard on the proposals.

I’m now going to turn to speak in Welsh, so you may need your headphones.

Photo of Baroness Mair Eluned Morgan Baroness Mair Eluned Morgan Labour 2:54, 4 June 2024

(Translated)

Dirprwy Lywydd, it was a tragedy for everyone who was infected and affected. Sadly, many of them are no longer with us. I want to give assurances to those listening today that changes have been made and, very importantly, that the service and the blood supply is very different now. Everyone who is a blood donor is an unpaid volunteer, and the risk of infected blood going into the UK blood supply is less than one in 20 million for HIV and hepatitis C. Anyone who is concerned that they may have been infected can access a home testing kit through the Public Health Wales online service or through their health board or surgery.

Photo of Baroness Mair Eluned Morgan Baroness Mair Eluned Morgan Labour 2:55, 4 June 2024

Dirprwy Lywydd, the scandal of infected blood is a dark stain on the history of the NHS and of our public institutions. We must be better, and we must do better than the denials, the false reassurances, the complacency, the cover-ups, the obfuscations and the repeated failures at an individual, institutional and Government level that characterised and compounded this awful tragedy, which cost so many people their lives and their futures.

Photo of David Rees David Rees Labour 2:56, 4 June 2024

(Translated)

I have selected the three amendments to the motion. I call on Mabon ap Gwynfor to move amendments 1, 2 and 3 tabled in the name of Heledd Fychan.

(Translated)

Amendment 1—Heledd Fychan

Add as new point at end of motion:

Calls on the Welsh Government to make representations to the UK Government to ensure that all affected individuals in Wales receive their second interim compensation payment within 90 days of the publication of the Langstaff report.

(Translated)

Amendment 2—Heledd Fychan

Add as new point at end of motion:

Calls on the Welsh Government to enact all recommendations of the Langstaff report pertaining to devolved areas of responsibility in full and without delay.

(Translated)

Amendment 3—Heledd Fychan

Add as new point at end of motion:

Calls on the Welsh Government to proactively reach out to all affected individuals in Wales with the offer of relevant support and counselling.

(Translated)

Amendments 1, 2 and 3 moved.

Photo of Mabon ap Gwynfor Mabon ap Gwynfor Plaid Cymru 2:56, 4 June 2024

(Translated)

Thank you very much, Dirprwy Lywydd, and thank you to the Government for agreeing to bring forward this debate this afternoon. Although it is a debate that clearly deserves urgent attention, the truth is that we shouldn't be in this situation of having to have the debate in the first instance. 

Photo of Mabon ap Gwynfor Mabon ap Gwynfor Plaid Cymru

The findings of the Langstaff report on the infected blood scandal are an utterly damning indictment of an entrenched culture of institutional abuse, governmental neglect and political obfuscation that was allowed to fester in our body politic for decades and that led to tragic consequences on an unprecedented scale. First and foremost, it is right that we pay tribute to the inspirational campaigning of the affected individuals who have fought  tirelessly for justice in the face of powerful vested interests that sought to silence their plight at every turn. Thanks must also be expressed to my colleague Rhun ap Iorwerth for his chairing of the cross-party group and his consistent support to all those affected. So too I'd like to thank Julie Morgan for her immense contribution in this fight.

Though nothing will fully repair the damage inflicted on their lives by this scandal, I hope the report can provide those individuals impacted with some degree of closure and finally initiate the long-overdue process of accountability. I also hope that this proves to be a watershed moment in addressing the glaring imbalance of power at the very heart of our criminal justice system. From the Hillsborough disaster to the Post Office Horizon scandal, the wheels of justice can often turn far too slowly when it come to the misdemeanours and failings of the wealthy, the elite and the well-connected, as is sadly attested by the fact that numerous victims have gone to their graves long before justice has come to light.

It is for this reason I believe there is a particular responsibility on us as elected representatives, regardless of our political affiliations, to reflect on the report with the utmost humility that it deserves and to strive at all times to never lose sight of the true meaning of public service. It is in this spirit we have introduced a series of amendments to the Government's original motion to this debate. Last month, the Cabinet Secretary confirmed in her response to my topical question on this matter that she had received assurances from the UK Government that the second interim compensation payment of £210,000 to affected individuals registered on the support scheme will be paid within 90 days of the publication of the report. Our first amendment, therefore, calls on the Welsh Government to do everything it can to ensure this pledge is fulfilled as promised. It is vital that restitution for affected individuals, however meagre it may be in the context of their suffering, is not held up by a change in Government at Westminster.

I'd also welcome an update from the Cabinet Secretary in her response as to the duration of the regular payment scheme. Concern has been raised that regular payments are only planned up to April 2025, at present. So, does the Welsh Government have any intention of extending these payments beyond this point?

We also believe that the Welsh Government has a duty to be proactive in reaching out to the 264 people currently registered on the Wales infected blood support scheme with offers of relevant support and counselling, as set out in our third amendment. Of course, such was the protracted nature of this scandal, it straddled the pre and post-devolution eras in Wales, over which time, the range and complexity of powers assigned to the Senedd have evolved significantly. The report emphasises that the inability of both the Wales Office and the earliest Welsh Governments to challenge or scrutinise the settled position of successive UK administrations on the issue of infected blood use is a sad commentary on the effectiveness of these inter-governmental arrangements. Clearly, therefore, the frameworks of governance both here in the Senedd and on a pan-UK level can never again be allowed to fail so egregiously. And from the perspective of the Welsh Government, this means utilising the levers at its disposal as effectively and as extensively as possible. 

Photo of Mabon ap Gwynfor Mabon ap Gwynfor Plaid Cymru 3:00, 4 June 2024

(Translated)

So, for this reason, our final amendment calls on the Welsh Government to implement the recommendations of the report that relate to devolved areas of competence fully and without delay. These darkest chapters in the history of our health service, and the political institution more broadly, are a crucial lesson in the way that institutions that are supposed to incorporate the principle of doing no harm can be exploited, leading to further harm, ultimately. It is a duty upon us, therefore, for the victims of this scandal, to maintain the greatest accountability and transparency in public life, which should include firm safeguarding measures for whistleblowers and empower those most vulnerable in our society. I am confident, therefore, that you will support our amendments this afternoon. Thank you.

Photo of David Rees David Rees Labour 3:01, 4 June 2024

(Translated)

There are many Members who wish to speak on this item, so if Members could keep their contributions brief, I'll be able to call more speakers. Sam Rowlands.

Photo of Sam Rowlands Sam Rowlands Conservative

Thank you, Deputy Presiding Officer. Can I also thank the Welsh Government for bringing forward this important debate today? Whilst, technically, it is a debate, there are no party lines here when it comes to the issue at hand, and we on these benches agree with all the proposals that the Government has set out and also with the amendments that Plaid Cymru have put forward here today. And it's simply because the infected blood scandal is one of the most grotesque miscarriages of justice in British history. Each of the victims had their entire lives turned upside down, destroyed or even lost in such agonising circumstances, and it's entirely right now that the priorities of Governments, both here and in Westminster, are ensuring that compensation gets to those victims and the families of those victims as well.

It's a cliché, but we also need to ensure that lessons are learnt from this as well. It must be a priority that we never allow cover-ups and, essentially, corruption of this kind to happen again in our institutions, and in particular our largest public institutions that are there to protect and serve the people that we represent. Cabinet Secretary, like you, I'd like to share a couple of stories that residents have shared with me in terms of some of their awful experiences. A resident in north Wales, who was a recipient of the Welsh infected blood support scheme, shared his story with me of being infected as a child with hepatitis B and HIV and hepatitis C, spending months in intensive care. He described the lifelong impact on him, his wife and parents as 'long gnawing at our spirits'. So, aside from the physical health impact, that 'long gnawing at our spirits', which was constantly with them. Another constituent was infected with hepatitis C through treatments for Von Willebrand disease, and her mother also infected, and both had to undergo liver transplants—clearly a very, very serious procedure that has long-term impacts for them and their family. And there are many traumatic details to these cases and far too many others. All of these people are in our thoughts here today, as we engage in this debate.

Of course, we did have the opportunity to discuss the inquiry report before our recess a couple of weeks ago, but Cabinet Secretary, as you pointed out, there have been some updates in the interim, and I'm pleased that, on 24 May, as part of the pre-election wash-up process, the Victims and Prisoners Bill was granted, as you say, by Royal Assent, creating the infected blood compensation authority, which will be responsible for making these final payments to victims. There are, of course, a number of moving parts within that, so I wonder, Cabinet Secretary, if, as part of your closing, you'll be able to just clarify that confidence that you have that, with the general election taking place now, and some of those moving parts, you have that confidence that this compensation will indeed get through to people who rightfully deserve it in the quickest timescale possible; we're told that by 24 August is the deadline. 

I'm also pleased, as you mentioned, Cabinet Secretary, that the interim chair of the IBCA, Sir Robert Francis, made a statement that they are working as quickly as possible to be in a position to receive those applications and make those awards, so I'd like to understand how you may be working with the IBCA to help that process happen with the much-needed haste.

I'm conscious that there are many speakers here today, Deputy Presiding Officer, but I simply want to thank the Welsh Government for bringing forward this debate and recognise all of the hard work done by so many people over so many years to ensure that justice is finally being done. Thank you.

Photo of Julie Morgan Julie Morgan Labour 3:05, 4 June 2024

I'm very pleased that we're joined in the public gallery by a large group of those infected and affected here in Wales, including my constituents, Sybil and Bev, and chair of Haemophilia Wales, Lynne Kelly. I'd like to pay a particular tribute to Lynne Kelly to thank her for the sensitive, determined way that she has led this group. Because it's those that have had their lives incomprehensibly turned upside down that must be at the forefront of this debate today. I'd like to, therefore, put on record the experiences of two of my constituents, Sybil and Bev, illustrative of the experience, of course, of many others.

Sybil had a heart operation in 1989. Ten years later, she received a letter from the head of the Wales blood transfusion service and got the news that she had blood infected with hepatitis C. She was told not to use the same crockery or cutlery as her husband, and not to have an intimate relationship. Sybil received no counselling. She had to attend the infectious disease clinic at the University Hospital of Wales, and described how she felt dirty because she had hepatitis C. The side effects of her treatment were worse than having chemotherapy. The publishing of the infected blood inquiry's report on 20 May was a milestone in the campaign for justice. In Sybil's own words, 'No-one can possibly begin to understand how I currently feel when hearing Sir Brian Langstaff's opening comments say, "This was no accident".'

I'll now turn to Bev, whose two brothers, Gareth and Haydn, died 10 months apart in 2010 after receiving infected blood contaminated with HIV and hepatitis C. Gareth and Haydn were key figures in the campaign to provide support and justice to haemophiliacs and their families through Birchgrove Wales, Haemophilia Wales, the National Birchgrove Group and the Tainted Blood campaign group, and, in fact, they started off by meeting as a group in the Birchgrove pub in my constituency in Cardiff North, but now, of course, it has become Birchgrove Wales.

When haemophilia patients were told about their HIV diagnosis, it was a terrifying ordeal—a death sentence, with life-expectancy estimates of between two and five years. The stigma was horrendous and the majority of patients kept their status secret. The groups that Gareth and Haydn set up to support those who had been infected were a lifeline. Bev told me that Gareth was angry, outspoken and determined, whereas Haydn was much quieter and measured in his approach, working away and quietly researching. 

With devolution in 1999, campaigning to get the truth gathered strength, and Gareth, as chair of the newly formed Haemophilia Wales, presented the case for a public inquiry at the first cross-party group held in the newly formed Assembly. When Bev travelled to London on 20 May, she described it as an 'emotional, uplifting experience' to hear the outcome and see survivors from across the UK, but this was filled with huge sadness given the fact that her brothers, Gareth and Haydn, with their huge input towards the inquiry, were not there to hear it. She wished they could have been there.

But the fight is not over. Brian Langstaff has said that it was not an accident, and that has been a huge comfort, I think, to many of the people infected and affected. But there are great worries about whether Sir Brian's full list of recommendations will be implemented. There are concerns about the monthly support scheme, and many people are worried that they might be financially worse off if Sir Brian's recommendations are not acted upon. I think many people believe that false hope has been given. And I think, if you look at the history of what's happened to this group, you can absolutely understand why people feel that way. This is a fantastic report, Brian Langstaff was absolutely great in everything he said, but now we've got to make sure that it is implemented, and I know that the Cabinet Secretary will do all she possibly can within our powers here to make sure that all those recommendations are implemented. It's taken 40 years to get to this point, and we need to learn from past mistakes and do the right thing from the outset. 

Photo of Rhun ap Iorwerth Rhun ap Iorwerth Plaid Cymru 3:11, 4 June 2024

(Translated)

It was an honour to be in London some weeks ago to listen to Sir Brian Langstaff announcing his final report. Julie Morgan was there as well, and so many of those who have been campaigning over the years in Wales. It was an extremely emotional event, with many in tears, of course, and remembering those who could not be there—those who had paid with their lives for the scandal that should never have happened and, yes, that was no accident. And they were there to hear the findings and to accept the justice that they deserved, and to hear the truth, of course—we all know that it was the truth all along. 

Mr and Mrs Hutchinson, my constituents, presented me to the scale of the scandal, and I've kept in touch with them over the years. It was through them that I learned of this injustice. Through them I became part of the cross-party group on infected blood, which was chaired by Julie Morgan at the time. And when she became a Minister in the Government, it was my honour to take over as chair and co-operate and work closely with Lynne Kelly and all of the individuals and families who have given their lives literally, or their time, their energy and all their passion to fighting for the justice that we haven't quite had yet, but we're very close to getting it. Listening to them again at lunchtime today—the brothers who had lost their sisters, the sisters who had lost their brothers, people having lost their parents, parents who had lost their children; the stigma, the name calling, the shame that has cast a shadow over so many lives.

I'm not going to make additional points in terms of what we need to see from the Welsh Government and the UK Government, more than what has been said by Mabon ap Gwynfor on behalf of the Plaid Cymru benches here, but just to echo those words and just to make the point that we can't miss a second in our determination to reach the end of this journey and get that real justice, because an important milestone has been reached in that statement by Sir Brian Langstaff and the work of the inquiry, but it's only a milestone at present.

The apologies and the strong response from the Ministers in Westminster came just hours, indeed, before a general election was called, so things have been halted, but we now, under the next Government, of whatever stripe, need to be just as determined as we were ever to press ahead with this, for those who are still campaigning, and those who, because they've paid the ultimate price for this, can't do that anymore. It's our duty, and our debt to them is to do everything that we can to ensure that they get that justice. 

Photo of Mark Isherwood Mark Isherwood Conservative 3:15, 4 June 2024

Oh, I'm speaking. Thank you. The damning findings of the infected blood inquiry published on 25 May shone a light on one of the biggest treatment scandals in NHS history. An estimated 3,000 people infected with HIV and hepatitis C after being given contaminated blood products have died. Around 400 people in Wales are known to have been infected, excluding those who died without it being known they were infected. Haemophilia Wales state that 283 patients in Wales were infected with hepatitis C in the 1970s and 1980s, and over 70 people with haemophilia died in Wales alone.

As the five-year inquiry stated, infected blood was not an accident and was avoidable. The truth had been hidden and victims had been repeatedly failed. Haemophilia Wales has asked me to speak about the impact of infected blood on North Wales constituent Jane Jones and her family. Jane was infected with hepatitis C through treatment for Von Willebrand disease, a rare clotting disorder. She was not told about her infection. Her late mother Anona was also infected with hepatitis C and both underwent liver transplants due to hepatitis C. Jane travelled from north Wales to London to hear the recommendations made by Sir Brian Langstaff, chair of the infected blood inquiry. She was interviewed by the media in Welsh and English for weeks ahead of the inquiry and on the day itself, and was chosen to represent Welsh victims and Haemophilia Wales. On 21 May, Jane represented Haemophilia Wales and Welsh infected blood victims in Parliament and watched John Glen's statement on infected blood compensation from the Speaker's gallery.

Haemophilia Wales are very grateful for the important role Jane and her mother played campaigning for the public inquiry to finally get to the truth about what happened. Both maintained that they had never been informed about the risks of the treatment and were then not told about their infections. As Jane said in her statement to the inquiry, being infected with hepatitis C is something you would not wish upon an animal.

A Denbighshire constituent, Rose Richards, has also written asking me to speak on her behalf in this debate. She is an affected person both as a carrier of the haemophilia gene and as a sister to a haemophiliac brother who died of AIDS in 1990 aged 46, after receiving contaminated factor VIII treatment in the early 1980s. She is also a core participant in the infected blood inquiry and has submitted two written statements to it. She made a decision on whether to have children based on information that withheld the truth about the known risk of serious harm. Her sons, born in 1983 and 1985, both have haemophilia. Fortunately, neither required factor VIII until it was a safer product in the late 1980s. As she states, however, the experience of hearing of other parents losing their children has been harrowing now that we know the truth about the scandal. She added that, although Sir Brian Langstaff recommended that the current ongoing support payments under the Wales infected blood support scheme should continue for infected persons and spouses or partners of infected persons who have died, and compensation should be paid in addition to the support payments, there's been no commitment to honour this. She concluded that, 'As a group we're very concerned about any further Government delay.’ Victims continue to die at the rate of one every four days without justice.

Speaking here in the 2017 debate, calling on the UK Government to hold a full public inquiry into the contaminated blood tragedy of the 1970s and 1980s, I quoted Monica Summers, whose husband Paul, a contaminated blood bank victim, died on 16 December 2008, aged 44. Their daughter was five years old. Monica said,

‘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 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.'

Their daughter would now be 20. As I said then, contaminated blood has had and continues to have a devastating impact on the lives of thousands of infected people and their families. 

Photo of John Griffiths John Griffiths Labour 3:20, 4 June 2024

Dirprwy Lywydd, I'm aware of three victims of the contaminated blood scandal from my constituency in Newport East: Colin John Smith, Terry Webley and Bill Dumbleton, all victims of the shocking failures of the health and political systems that were involved and have been set out in the report. At the event earlier held by Haemophilia Wales and chaired by Lynne Kelly, such an amazing campaigner on these issues and such a source of strength and support to the families, I met  Joanne Davies who spoke about her husband Gavin's brother, Terry Webley, who died aged 10, and of the ignorance and fear that we've already heard about, the stigma that existed around HIV/AIDS at that time, which meant that they were avoided within the community, the families involved, that the schools didn't provide the support that they should have, that the local media weren't sensitive or understanding and showed little empathy, there was bullying and name calling involved and, of course, that has an ongoing impact on the health of the families, and, in Joanne's case, the health of her husband Gavin and the wider family.

And also present were Colin and Janet Smith, who lost their son Colin John Smith, who died aged seven of AIDS weighing just 13lb, having been a victim of those failings. And I know that their house, Dirprwy Lywydd, was daubed with abuse and graffiti as a result of the situation of Colin John Smith, that it was difficult to get him into school and that there were problems at the school and, again, that there were these problems within the wider community. It was a terrible scandal and indictment of the systems at the time, Dirprwy Lywydd, and so many families suffered in the way that these families did. Colin John Smith knew that he was dying and was in fact giving his toys, before he died, to his brothers. You just think of that huge torrent of emotion that engulfed families at the time, so many families, and the terrible failings of those systems set out in the report following the inquiry. 

But I would just like to say in closing, Dirprwy Lywydd, that, as we reflect on that suffering—and we'll hear further examples here today, and we've heard those examples through the inquiry report and also proceedings up at the House of Commons in Westminster—when we reflect on the scale of the human tragedy and suffering involved, I really think it's important that we also reflect on the massive human spirit that's involved in those families of the victims, the love and the commitment that was sustained over such a period of time and is still sustained today that produced the campaign, produced the inquiry and the report that got that recognition for the victims and their families, which should now lead to the speedy action that others have called for today. 

And I would just like to close with the words of Janet Smith, Colin John Smith's mother, when she spelt out what this campaign, what the inquiry, what the report is about for the victims and the families. Janet said:

'I want recognition. I want my son to have his name back. His name is Colin John Smith. And that's what I want people to remember.' 

Photo of Sioned Williams Sioned Williams Plaid Cymru 3:24, 4 June 2024

'To save face and to save expense, there has been a hiding of much of the truth.'

Sir Brian Langstaff's damning and shocking words must be at the very forefront of our minds as we consider the impact of the infected blood scandal on the constituents that we represent here. There are two sisters from the Swansea valley in the public gallery today, Sharon and Rhian. They wanted me to highlight their family's situation and suffering in relation to this appalling and unforgivable scandal, because their story highlights how the unique circumstances of each family affected must be considered, recognised and fairly and equally compensated without further delay. Their late father, Arwyn Davies, from Trebanos, was a haemophiliac. He was under the care of, and trusted in, the medical professions that provided treatment for his condition. He attended both Cardiff and Swansea haemophilia centres, and Mr Bloom was his main consultant. Arwyn Davies died on 18 March 1992, aged 60 years. His death certificate stated he died of hepatitis C, hepatoma and haemophilia.

His whole career was spent as a local government officer, but, in the 1980s, his health began to deteriorate and he had to take early retirement from work, and little over a year later he was dead. His wife Eira passed away in 2018, 26 years after her husband, and only after their mother's passing did Rhian and Sharon become aware of what was written on their father's death certificate. During those 26 years, no contact was made to inform any of the family of any of the risks they had been made subject to, or to inform them they were entitled to any kind of benefit payments. It was so hard to hear from Sharon and Rhian about their long and distressing battle to obtain medical records relating to their father, as they campaigned for justice for their family. But they finally got proof, which confirmed their father was given contaminated factor and that the consultants were aware of how he had died.

Since obtaining this information, they've been working with the infected blood inquiry and Haemophilia Wales to ensure that someone is held to account. And although Sir Brian Langstaff took the unusual step of announcing interim compensation ahead of the final report, this was only for the living infected and the bereaved widows. There has been no commitment by the UK Government to the recommendation in the second interim report on compensation, of April 2023, which called for interim compensation payment for the previously unrecognised deaths, and, to date, children who lost parents, like Rhian and Sharon, have never been provided with compensation or recognition of their father's death. They haven't even received a letter of apology from their local health board. So, my question is: how will the Welsh Government endeavour to ensure the UK Government do not delay progress any further?

And within the new regulation of infected blood compensation, under the heading, 'Estate application', it states:

'where an affected person has died it is not possible for the personal representatives of their estate to apply for compensation.'

Cabinet Secretary, do you agree that is unjustifiable when people, such as Rhian and Sharon's mother Eira, suffered and endured financial hardship and ill health, with no financial support, following the death of Arwyn? Does the Welsh Government therefore accept that the right thing to do in circumstances like this family's would be to ensure that the family of the affected be allowed to benefit from compensation? I believe it's not only morally right, it's also a symbol of an apology rightly owed by the sate—the state, remember, who covered up—to those impacted by this scandal, those whose whole lives have been scarred by loss and by lies? And how further will the Welsh Government ensure that all of those now currently living with haemophilia, like Arwyn's grandson, Sharon's son, are provided with the best possible support by public services, not having to explain the implications of their condition to education settings and healthcare settings, for example, each time, which is what's happening, so that wider steps can be put in place to increase awareness and ensure safety for all those who live with haemophilia? Diolch.

Photo of Hefin David Hefin David Labour 3:29, 4 June 2024

I remember the day eight years ago, I was sitting next to Julie Morgan in this Chamber, and it was just after lunch time, and she said, 'There's a cross-party group I'm chairing, would you come and meet some of your constituents who are affected by this scandal?' And I went to meet with them—and I can see Kirk Ellis in the gallery today—and it had a huge impact on me and I wanted to join that campaign, so I'm proud to be vice-chair of the Senedd cross-party group on haemophilia and contaminated blood.

I just want to give some examples of those constituents I've met and have been in touch with since then. Janet Morgan and her daughter Felicity wrote to me to talk about their late husband and father who was a haemophiliac, who was infused with factor VIII and, as a result, was infected with hepatitis C. He received a number of clinical trial medications that made him very ill, and he and his family were robbed of a normal life. Felicity was only 12 years old when her father was informed that he had hepatitis C and three to five years to live. The loss of their husband and father in 2010 shook them and still deeply affects them as a family, as he was such a loving husband, father and grandfather, and their lives have never been the same.

I was contacted by Susan Hughes, whose brother Alan Jones was a haemophiliac who was infected with HIV and hepatitis C after receiving contaminated blood in the 1980s at the age of 15. He was told at the age of 17, without his parents being present, that he had contracted the viruses. Alan had learning difficulties after suffering a brain haemorrhage at the age of three, and he passed away in 1994 at the age of just 25 of a brain tumour caused by the AIDS virus. Alan and Susan's parents have now sadly passed away themselves, and they never saw justice.

I was contacted by Professor Nicholas Moran, whose late brothers, Peter and Tim, who were twins, were co-infected with HIV and hepatitis C by NHS contaminated blood products. They died at a young age due to HIV-related illnesses. Their mother's health suffered consequently, and her passing was a direct result of that. Professor Moran is a senior surgeon who's worked exclusively in the NHS for over four decades, but he has told me that he is so shaken by the outcome of this scandal that his confidence in the service has been shattered, particularly by the devastating revelations of Sir Brian Langstaff's report. As a result, he has decided to leave the NHS. He wants to see the recommendations from Sir Brian’s report implemented fully and without delay, and he’s concerned that although the UK Government has announced that interim payments will be made to infected persons, there has been no commitment to support affected relatives or previously unrecognised deaths.

I come to Kirk Ellis. Kirk gave me this tie, which is in the colours of the campaign, outside Wayne David’s office in Bedwas, I think it was three years ago now. We were still working on just basic compensation levels at that point. He regularly attends meetings of the cross-party group, and, as I’ve mentioned, he’s in the public gallery. I met him just after lunch today, and he said he’s got real concerns about the UK Government’s proposed compensation scheme. He could actually end up worse off in spite of the payments if he was to get the lump sum mentioned in the compensation scheme statement, as the support payments he receives would then stop. His lump sum would last him and his family for 20 years at most, and he points out that in Scotland the Scottish Government has guaranteed that ongoing current support payments are for life, as well as the lump sum compensation payments proposed by the UK Government in response to Sir Brian’s report. What he wants the Welsh Government to do—he recognises that this was a pre-devolution issue—is to make sure that that issue is resolved, that he isn’t reliant on just 20 years of funding as a result of the compensation, and that he isn’t caught in the trap of having that income that reduces, then, the disability benefits to which he was previously entitled.

And finally, I want to pay tribute to Wayne David, the now former MP for Caerphilly. Wayne worked very hard on this issue in the House of Commons, and presented a petition recently on the infected blood inquiry in the Chamber of the House of Commons. The petition called for immediate compensation to be given to those who had been affected by contaminated blood, and, jointly, our constituents Lee Stay and Kirk Ellis had added a number of local names to that petition. I think Wayne’s campaigning spirit on this will be missed from the House of Commons, but I think he’s worked hard too to make sure that we see the outcome that we’ve got today, albeit, I still think, as a staging post in the journey of providing full justice to the families and people affected by this scandal.

Photo of Luke Fletcher Luke Fletcher Plaid Cymru 3:34, 4 June 2024

Firstly, I want to pay tribute to all those who have campaigned on this issue and continue to campaign. Some are here with us today, and we will remember the ones who are not. As the Cabinet Secretary highlighted, before FMQs, there was an opportunity to listen to those affected by this scandal, and I don’t think anyone could have left that room without a clear understanding of the injustice faced by families. You would have heard how people in positions of authority vilified these families for raising concerns, accused them of lying, accused them of giving life to rumours. Corruption is the long and short of it, isn't it—a bid to save money. What an indictment of our system.

Last week, I was contacted by Deborah James, a constituent in Bridgend, who told me the story of her brother. Her brother, a serving police officer, died aged 31 in 1982, as a result of receiving contaminated blood at the University Hospital of Wales in Cardiff. Deborah shared that he had been battling Hodgkin's lymphoma, and had been given the all-clear following chemotherapy. However, complications meant that he had internal bleeding and was taken to Cardiff, where he received several pints of blood to replace the blood that he was losing. They were advised that he had received what was referred to as 'a bad pint', and that he had been infected with hepatitis C. Due to the impact on his liver, Deborah's brother suffered jaundice. It would hurt for him to have them hug him, and—I'm quoting Deborah here—they have not as a family ever recovered from what happened in those last few weeks of his life.

One of the key things that stood out for me in the meeting earlier was something that was said: an apology means nothing if there's no recognition of what people have gone through. Compensation is one way of giving recognition, and whilst an interim compensation payment of £210,000 to those infected will be made, disappointingly there's been no commitment to make the interim compensation payment available for the unrecognised, as highlighted by other Members. I would hope the Minister could comment on this, because this is, of course, a concern for families—specifically how we can help those families whose relatives died but the cause of death was registered as something else.

There's no denying that deaths were covered up, documents were destroyed—it was in the report. For Deborah's family, it has taken 42 years to get to the truth. The worry now is that, despite recognition that what happened was not an accident, families will be denied compensation because of destroyed documents during those cover-ups. I will conclude, Dirprwy Lywydd, by referring back to Deborah's words to me: 'It is inconceivable that, 42 years after his death, and following Sir Brian's report, there is still uncertainty, and battles for those infected and affected are still to be fought'.

Photo of Jenny Rathbone Jenny Rathbone Labour 3:37, 4 June 2024

We've already heard from the Cabinet Secretary for health and many other people about the tens of thousands infected and affected, as well as the 3,000 people who died of infected blood. But this isn't just about a treatment scandal, as Luke Fletcher has already said. This is about a criminal cover-up. And it's that that I wish to address my remarks to today. Sir Brian Langstaff catalogues three separate sets of documents that were lost, or deliberately destroyed in most cases, and the failure to safeguard these documents, which were supposed to be kept in a safe place, precisely to be able to be called upon by victims to consolidate their claim for compensation.

The first lot were papers relating to the Advisory Committee on the Virological Safety of Blood. It was discovered back in the middle of 1995 that one of the volumes had been destroyed, in September 1994. No attempt was made to safeguard all the remaining volumes of documents, which were then destroyed between October 1997 and November 1998. This is truly, truly shocking. We have to understand how it was that the Department of health was allowed to continue to try and cover this up, even after Yvette Cooper asked for a report, which was called the self-sufficiency report, when she became the Under-secretary of State for Public Health in 2002.

This led to an extraordinary cover-up. An initial report by a senior officer at the Department of health was actually delivered to somebody on the day before Christmas 2002, and it did not emerge to the light of day until a further three years, by which time it had been doctored from a factual account of what the document said about self-sufficiency to an excuse for why it hadn't been possible to avert this terrible scandal. These are really, really devastating points that we really need to take seriously.

Lord Owen's papers, the former Secretary of State for health, completely disappeared, because obviously they revealed things that they did not want to admit. And in one case, the Department of health was saying it was probably destroyed by a junior member of staff. Really? I just cannot see that. It's absolutely unjustifiable and egregious behaviour by our public servants. 

To this end, we really do have to challenge the defensive culture of cover-up and get behind Sir Brian Langstaff's calls for Ministers to consider statutory duties of candour for civil servants and Ministers in all their day-to-day work. 

I am very pleased that Mark Drakeford, under his leadership, did introduce this duty of candour last year, but we need to ensure that this extends to leaders in our health services as well. There is clearly much more that we need to consider on this. But we have to ensure that leaders in the Welsh NHS, including board members, really are going to be following through with this and that our own civil servants also are not continuing to be less than candid with the truth.

Photo of Heledd Fychan Heledd Fychan Plaid Cymru 3:42, 4 June 2024

(Translated)

I'd like to associate myself with a number of the comments that have already been made. Sometimes, there is a contact made by a constituent that really strikes you, and I think that we've all received e-mails from families and from those who have suffered and who continue to suffer today that have had that impact. So, I'm going to use my time to give a voice and share some of those stories, according to what has been asked of me. 

Maybe many of you have read about or seen on tv the story of Owain Harris regarding his father, Norman. Norman had haemophilia, and in the 1970s and the early 1980s he began a new treatment for the condition. In the mid 1980s, he was told that he had contracted hepatitis C and that he had HIV. His son, Owain, was four years old at the time, and his parents did not share the full diagnosis with him until he was 26 years old. Norman died in 2012. Owain, his sister and his mother have given evidence as part of the inquiry, but it was only last month that they spoke publicly about this for the first time, with Owain saying, 'This was a total cover-up by the establishment.'

Photo of Heledd Fychan Heledd Fychan Plaid Cymru 3:43, 4 June 2024

David shared with me in his own words, 'I was infected with hepatitis C in the early 1980s, likely between the age of nine and 13. I was informed of my diagnosis aged 23 in 1994, and ever since this date have been permanently in a state of worry about my health and my mortality.' He went on to share with me the impact this has had on his life, including having to fight tooth and nail to get access to the new retroviral drugs that were becoming available towards the end of 2014.

Another constituent, Paul from Cardiff, said, 'I'm one of the haemophiliacs that has been infected in the mid 1970s, early 1980s, with hep C. This has made life a living nightmare. I had to undertake horrendous treatments. I could not continue working due to my mental health and the stigma. I have hidden myself away, no longer feeling able to interact with others and became isolated. People reacted to my condition at many times with abuse. It has left me with life-long complications, not to mention not being able to have children and causing many relationship issues through my life.' He urges us as a Senedd, 'Please, with people passing away at an average of four a week, all we want is to have some of our life that is ours and not stolen from us by this deliberate use of infected blood, which has destroyed mine and many others' lives.'

Another constituent, who wants to remain anonymous, shared the story of her father, who died 20 years ago at just 38 years old. Carol told me of her father Ian’s death in 2004, at the age of 48.

Photo of Heledd Fychan Heledd Fychan Plaid Cymru 3:45, 4 June 2024

(Translated)

Rachel wrote to me, saying,

'My father (who was a haemophiliac) died of AIDS in 1990, after a six-year illness, during which his body and brain wasted away.' 

Photo of Heledd Fychan Heledd Fychan Plaid Cymru

You referenced at the beginning, Cabinet Secretary, the Sugar family. And it is important that we do tell the story of Leigh, a much-loved son, husband and father, who was a mild haemophiliac, infected with his first and only treatment at the age of 14, following a fall from his horse. He was only told of his infection 14 years later, by which time he was married and had five and three-year-old daughters. He died at the age of 44 from liver cancer, having been infected with hepatitis C. His family shared that he spent the last year of his life in intense pain and suffering, and that his father Graham died three years ago, never seeing justice. They describe their family as 'having been torn apart by contaminated blood'. 

I'd like to pay tribute to all the victims and their families who’ve campaigned for justice and who've been brave enough to share with us their suffering and continued pain. We can acknowledge that today, apologise for all they’ve been through, but also state unitedly that we will ensure everything possible that can be done to right this terrible, terrible wrong is done. It should never have happened and nothing we do will put this right, but we can try and offer that support. This is going to have an impact for generations to come on these families affected. Therefore, I'd like to finish by asking the Cabinet Secretary: what support is being provided to those still living with the infection, who are in pain, who are suffering, but also their families, who are still in pain and suffering? We need to be able to provide not just compensation, but ongoing support, and I'd like to know how they will be able to access that support. Diolch.

Photo of Vikki Howells Vikki Howells Labour 3:47, 4 June 2024

Like other speakers before me, I would like to read the testimony of two of my constituents whose lives have been irrevocably changed by the contaminated blood scandal. And I think it speaks volumes, as to the stigma still attached to this, that both of my constituents have asked that their stories remain anonymous. One of my constituents contracted hepatitis C from contaminated blood whilst being treated for leukaemia between 1985 and 1989. They have now lived with hepatitis for 35 years, undergoing five gruelling courses of interferon, numerous invasive and non-invasive tests, reduced career prospects and limitations on the size of their family. Prior to diagnosis, they were sent to one of the first AIDS wards in London and then to a mental health institution in Cardiff, because the medical professionals thought that they were making their illness up. Fortunately, my constituent tells me they have worked hard to manage their condition and are now in good health, but they say there are many less fortunate, who they believe deserve so much more. 

My other constituent was just 17 years old and ready to start their life, when they were told by their haemophilia doctor that they'd contracted HIV from contaminated blood. They were told not to tell anyone, not even their mother. Doctors told them that they would live about 18 months. They've seen their fellow haemophiliac friends dying of AIDS in the hospital, and they thought that they would die in the same way. This was a death sentence. They had three nervous breakdowns over the years, attempted suicide three times, and for years spent spells in and out of hospital. The stigma associated with HIV, they say, is unbearable, and they meet this in all aspects of their daily life. In 1994 this same constituent was told that they were also infected with hepatitis C. They underwent three courses of treatment with horrendous side effects. They haven't been able to have children, get life assurance or mortgage protection, due to the impact of HIV and hepatitis C. 

My constituents say they hope that the inquiry's recommendations will prevent things like this from ever happening again, that people will not be tested without consent, that commercial interests will not take precedence over patient safety. They hope that future generations do not have to suffer the pain and stigma that they have, and that medical professionals will be educated to ensure that they are treated with the respect that they deserve. 

Photo of David Rees David Rees Labour 3:50, 4 June 2024

(Translated)

Siân Gwenllian? No. I call on the Cabinet Secretary to reply to the debate. 

Photo of Baroness Mair Eluned Morgan Baroness Mair Eluned Morgan Labour

Diolch yn fawr. I want to thank all Members who have contributed to this important debate today. I think it's been a really emotional debate, and it has been quite heart-wrenching to hear some of the stories of your constituents. There are just a few points I want to address. First of all, one of the issues that people have asked about is those who are unrecognised. Part of the issue here is that records are required to make claims. Now, we are aware that there have been issues with NHS records in the past. Both our Wales infected blood support scheme and the new infected blood compensation authority will work with those infected and affected to gather the information required for claims to be made. In terms of young beneficiaries, this is an issue that my officials have raised with the Cabinet Office, and we've been given an assurance that this is something that they're looking into. 

In terms of immediate next steps, Sir Robert Francis, along with the interim CEO of the IBCA, David Foley, will meet with the main campaign groups, including Lynne Kelly of Haemophilia Wales, to discuss looking at the proposals for compensation to check if they're fair. They will check if the scheme will work, and they will check if anything has been missed. And what they learn from these meetings will help frame the work of the IBCA. In terms of future and current schemes, representations have been made in each of the nations to retain the support schemes. Discussions, I know, are in their infancy, and officials will take on board the representations received.

I'd like to make it clear that we will be accepting all of Plaid Cymru's amendments. 

Photo of Baroness Mair Eluned Morgan Baroness Mair Eluned Morgan Labour 3:52, 4 June 2024

(Translated)

I also want to pay tribute to Rhun ap Iorwerth for his work as chair of the cross-party group on haemophilia and infected blood. I know that you have been fighting very hard for many years, along with those who have been battling for justice. 

Photo of Baroness Mair Eluned Morgan Baroness Mair Eluned Morgan Labour

I'd like some time to go through the report. He has taken years to write this report and we need to give it the respect it deserves, and so we will do that. And I want to assure Jenny Rathbone that there is, as you have noted, already a duty of candour in the NHS in Wales, including the one that applies to leaders in the health service. Tonight I think we unite as a Chamber and as a Parliament, and I'm sure you'll join with me to pay tribute to those who have suffered as a result of this, the greatest scandal in the history of the NHS. Diolch.

Photo of David Rees David Rees Labour 3:53, 4 June 2024

(Translated)

The proposal is to agree amendment 1. Does any Member object? No. Amendment 1 is therefore agreed in accordance with Standing Order 12.36.

(Translated)

Amendment agreed in accordance with Standing Order 12.36.

Photo of David Rees David Rees Labour 3:53, 4 June 2024

(Translated)

The proposal is to agree amendment 2. Does any Member object? No. Amendment 2 is therefore agreed in accordance with Standing Order 12.36.

(Translated)

Amendment agreed in accordance with Standing Order 12.36.

Photo of David Rees David Rees Labour 3:53, 4 June 2024

(Translated)

The proposal is to agree amendment 3. Does any Member object? No. Amendment 3 is agreed in accordance with Standing Order 12.36.

(Translated)

Amendment agreed in accordance with Standing Order 12.36.

(Translated)

Motion NNDM8595 as amended:

To propose that the Senedd:

1. Recognises:

a) the harm and suffering caused to thousands of people in the worst treatment scandal in the history of the NHS;

b) the tireless campaign and hard work of all those infected and affected to seek the truth; and

c) the UK Government’s apology for the decades-long moral failure at the heart of our national life.

2. Welcomes the final report of the Infected Blood Inquiry published on 20 May 2024 and its recommendations.

3. Welcomes the four-nations work to put in place an Infected Blood Compensation Authority.

4. Notes that further compensation payments will be made to people infected and affected by the scandal.

5. Calls on the Welsh Government to make representations to the UK Government to ensure that all affected individuals in Wales receive their second interim compensation payment within 90 days of the publication of the Langstaff report.

6. Calls on the Welsh Government to enact all recommendations of the Langstaff report pertaining to devolved areas of responsibility in full and without delay.

7. Calls on the Welsh Government to proactively reach out to all affected individuals in Wales with the offer of relevant support and counselling.

Photo of David Rees David Rees Labour 3:53, 4 June 2024

(Translated)

The proposal is to agree the motion as amended. Does any Member object? No. The motion as amended is agreed in accordance with Standing Order 12.36.

(Translated)

Motion as amended agreed in accordance with Standing Order 12.36.