Good afternoon. The first item of business is a statement by Shona Robison on the Penrose inquiry. The cabinet secretary will take questions at the end of her statement, so there should be no interventions or interruptions during it.
I am grateful for the opportunity to make a statement in response to the Penrose inquiry report, which was laid in Parliament yesterday. I thank Lord Penrose and his team for their work. Lord Penrose is currently unwell. That prevented him from launching the inquiry report in person yesterday. My thoughts are with him and his family.
I also thank affected patients and their families for providing very personal and sensitive evidence, which cannot have been easy. I recognise that some of them have joined us in the gallery.
The affected patients and their families must be foremost in our minds today. Yesterday, I met some of those who have been affected and heard their stories. Many people have died or suffered long-term disability and hardship as a result of the infections. Relatives have had to sacrifice careers to provide care and support. In some cases, partners and loved ones have become infected. Patients, families and carers have dealt with those difficulties with immense and enduring courage.
Although the events took place well before the Parliament was established, on behalf of the Government of Scotland and the national health service in Scotland, I say sorry to everyone who has had to deal with the devastating impact of infected NHS blood and blood products. I recognise that the events absolutely amount to one of the greatest healthcare-related tragedies ever witnessed in this country. We must keep the people who have been affected at the centre of our thoughts throughout the process, and I can only express my deepest sympathy and regret to them.
Lord Penrose has delivered a comprehensive report of almost 1,800 pages. It is a detailed and independent assessment of how the tragic events unfolded. I realise that there may be some criticism of the cost and the length of time that it has taken for the inquiry to report its findings. I am also very aware that, for many, the inquiry conclusions do not meet their expectations and are not the outcomes that they would have wished to see.
The issues were complex and covered a long period, back to 1974. In light of the number of people affected and the number who have died, and given the seriousness of the events, the people who were affected have now had the opportunity to have their stories heard by a fully independent public inquiry.
I turn to the findings. The evidence from affected patients is crucial. Lord Penrose set that out in full in his report, and it stands as vital, if distressing, testimony to what affected patients and their families have endured. The report provides estimates of the numbers of patients likely to have been infected. Those estimates add to what we know already and allow us to be more certain about the scale of the impact of the events.
Lord Penrose has identified delays to the introduction of hepatitis C screening in Scotland as a key thing that could have been done differently. Screening in Scotland was held back so that it could be introduced simultaneously across the United Kingdom. It is clear that the events predate devolution and that that simply would not happen now.
There are other things to learn about the approach of clinicians and healthcare staff; the way in which the health service works; the importance of patient safety; and how that relates to expert advice. In particular, Penrose has made observations about the NHS’s paternalistic attitude to patients in the 1980s, particularly in relation to giving patients information. That is not how the NHS in Scotland works now, and Penrose has acknowledged that the approach to patients today is very different. All those lessons from Penrose will instruct how we continue to build on the progress of our patient safety programme.
Lord Penrose recommends that the Scottish Government should take all reasonable steps to offer a hepatitis C test to anybody who might have been infected before 1991 by a blood transfusion and who has not already been diagnosed. We accept that recommendation and we will consider carefully how to take it forward. It is important to reassure people that we have previously made efforts to find those who have been infected, including a look-back exercise in 1995 and awareness-raising campaigns as late as 2008.
We expect there to be very few people, if any, who were infected through a blood transfusion and who have not been diagnosed by now. However, anyone who wants to know more will be able to find information on the NHS inform website or from organisations such as Hepatitis Scotland, Haemophilia Scotland and the Scottish Infected Blood Forum.
There is no barrier to hepatitis C testing in Scotland. Anyone who has been exposed via blood transfusion before September 1991 or by treatment for a bleeding disorder with blood products prior to May 1987 can be tested at their general practitioner’s practice. It is important that anyone who has been infected is diagnosed, so that they can access the best clinical care and support.
When talking about clinical care, I should take the opportunity to make it clear that our current blood safety record is excellent and that the risks of viral transmission by blood transfusion in Scotland and in the UK are exceedingly low. Donor selection criteria, stringent testing of blood donations and advances in technology mean that the blood supply is as safe as it can be. It is safe to give blood and it is safe to receive blood.
I will talk about the further steps that we will now take to support those who have been affected. There are two payment schemes for those infected with hepatitis C to which the Scottish Government contributes directly—the Skipton Fund, which provides lump sum and annual payments, and the Caxton Foundation, which provides discretionary payments to affected people and dependants. Over the past 10 years, the Scottish Government has already contributed more than £30 million to those funds for affected people in Scotland. Separately, there are payment schemes that predate devolution for those infected with HIV. They are managed by the UK Department of Health.
It is right to acknowledge that many patients and their families are of the view that the payments that they receive are insufficient. That view is reflected in the Penrose report. We have already committed to reviewing the schemes and we will now move ahead with that. Given that the two HIV support schemes predate devolution and are managed by the UK Department of Health, we will work with the other UK countries to take forward the review.
I recognise that the UK Department of Health yesterday announced a one-off payment of £25 million to support any transitional arrangements to a different payment system. We will, of course, ensure that any required contribution from Scotland is met in 2015-16. We must resolve the issue as quickly as possible, and I will go into the review with the view that we should be able to conclude our work in time to make an announcement by no later than world haemophilia day in April 2016.
I am also of the view that we must listen to affected patients’ views. I had the opportunity to hear from affected families yesterday and it is very clear to me that we have to improve the system. In Scotland, we will establish a patients and families reference group to help us with the review of the schemes.
I will say a few words about the work that we have been doing and will continue to do with patients and families and with the organisations that support them, such as Haemophilia Scotland and the Scottish Infected Blood Forum. I have met representatives from those organisations over the past few weeks and again today, and both have suggested various actions that we can take forward. We have already funded the forum to carry out a scoping exercise to investigate the support needs of those who are affected. That will contribute to the evidence base for the review of the financial schemes. We are separately working with Haemophilia Scotland to develop a pilot of additional social work support for affected people.
We have also funded a pilot of additional psychological support to affected patients through one of the haemophilia centres in Scotland. I am committed to the successful completion of that pilot and to learning any lessons about what additional support we can provide more generally. I also confirm that a national managed clinical network—essentially, a haemophilia committee—will be established for inherited bleeding disorders. It will closely involve patients and help to improve clinical services for the future.
Haemophilia Scotland and the Scottish Infected Blood Forum do vital work in supporting the affected patients and their families. I am pleased to confirm that the Scottish Government will commit to providing core funding for both organisations for the next three years, to ensure that they can continue their good work. I have today asked both organisations to help to establish the reference group to take forward the Penrose recommendation, the other actions that I have highlighted and the consultation on the review of the financial schemes. We will also be more than happy to discuss providing support to any other organisations that work with affected patients and their families.
The conclusion of the Penrose inquiry is a watershed moment. We can now say with some certainty that we understand how the tragedy unfolded. People who have been affected have had the opportunity to be heard and to put on record what happened, as part of an independent public inquiry.
I reiterate how sorry I am that the infections happened through NHS treatment. I have great sympathy for all those affected, with whom we will continue to work closely and to whom we will offer support in any way that we can.
The Penrose inquiry looked at what happened, but we must now focus on better supporting those affected. In doing so, I promise that we will continue to listen to and work with them. I recognise that my statement will not immediately fulfil the desires of all those who have been affected, but I hope that my comments reflect the Scottish Government’s intention—and my intention—to move forward and work with patients and their families in the coming years.
The cabinet secretary will now take questions on issues raised in her statement.
I add the sympathies of Labour members to the remarks that the cabinet secretary made and I thank her for the advance copy of her statement.
The Penrose inquiry report, which was published yesterday, laid bare the full horror of the blood contamination that led to so many lives being devastated and lost through hepatitis C and HIV. The victims’ testimonies in the report and the stories that we heard from those who attended yesterday’s event were nothing short of harrowing.
Bill Wright, the chair of Haemophilia Scotland, describes the blood contamination episode as
“one of the most distressing stories in the history of the NHS”,
and it is difficult to argue with his analysis. As the cabinet secretary said, he, like many others, was disappointed with the report’s findings. The most commonly used description of the report by families yesterday was “whitewash”.
The Parliament and the Government had no say over the report’s findings, but we can take the opportunity to put things right for many patients. Now that the inquiry is over, will the Scottish Government ensure that new and improved treatments that are being developed for hepatitis C are made available as soon as possible to the victims of this dreadful episode?
The First Minister stood shoulder to shoulder with the victims, first as Opposition leader, then as health secretary. Now that she is First Minister and the six-year inquiry that she ordered is over, will her Government make good on the commitment to financial support? The cabinet secretary just announced that financial support will be made available by April next year but, after victims have waited six years for the inquiry to report, is it not reasonable for the Scottish Government to make good on its commitment to them now and put financial support in place without any more delays? It is unfair to ask victims to wait yet another year when they have waited so long and when the Government has had so long to prepare for this day.
Of course, anyone who requires treatment for hep C and is clinically approved and recommended for treatment through the drugs should receive that.
The First Minister apologised on behalf of the Scottish Government for what happened. It is important that we recognise that.
Jenny Marra talked about what Bill Wright and others have said but, if she had listened, she would have heard him say that he wants to sit down with the reference group and discuss what the proper support should be. People who have been affected want to be involved in the review of the financial arrangements—that call has come from them.
Jenny Marra should understand the view of patients and campaigners, who want to talk to us about what the financial arrangements should be. It is through listening to Bill Wright and others that we have come to the conclusions that I laid out in my statement and decided to establish the reference group as a proper forum for discussing matters. It was Bill Wright who asked for world haemophilia day to be the point by which the new arrangements should be put in place.
I very much listen to the views of those affected and have done so over the past few years. I sat on the Health and Community Care Committee when it heard the first round of evidence on the matter, and I have met Bill Wright and others over many years, the past few weeks and, indeed, today. I will absolutely listen to those voices as we take this forward.
I thank the cabinet secretary for advance sight of her statement, and I entirely associate the Scottish Conservatives with the sentiments that she has expressed. I also thank the First Minister for having the courage to initiate the inquiry; indeed, I am quietly proud that it was the Scottish Government and the Scottish Parliament that initiated the inquiry that took place.
I want to make three very brief points. First, I associate myself with the cabinet secretary’s approach in responding to the relatives and others who have been affected. It is important that we are, through the actions and practical approach that we take, able to counteract any characterisation of the report as a “whitewash”. It is easy to understand why some people might make that comment, but I do not characterise the report in that way and I support the action that the cabinet secretary has taken.
Secondly, does the cabinet secretary have in her mind a timeline for advising us on further actions that might arise from consideration of the recommendation?
Thirdly, in relation to HIV compensation, will the cabinet secretary confirm that she will act with the Westminster Government to ensure that implementation of the provisions is as smooth as possible?
I will take the last question first. I point out that because the timeframe includes the general election, some of the discussions with the Westminster Government will have to take place after 7 May. Obviously, we will want to have those discussions soon thereafter.
I thank Jackson Carlaw for his comments. It has been a very long inquiry, and I very much recognise—we should bear this in mind—that the families and those who have been affected have waited a long time for what happened yesterday. He is also right to say that action is important; after all, this is not about looking back, but about looking forward.
As for the work of the reference group, when earlier I met people who have been affected and campaign groups, I found that they are keen to get the work under way. So am I; the reference group discussions will happen in short order, and the group will decide thereafter on priorities. Although some of that work will involve reviewing financial arrangements, I think that there are other things that we can get on with quite quickly, including the psychological and social work supports that many people have said need to be improved. I will get on with those matters in short order, and I am certainly keen and happy to keep Parliament updated on progress.
I commend to the cabinet secretary a constituent of mine, Robert Mackie, who—as many members will remember—sat with others outside the old Parliament building in all weathers campaigning for an inquiry. I also commend the Government for carrying out the inquiry.
We know that nothing will bring back people’s health, but with regard to financial matters—which might to some extent give the people security—I note that the cabinet secretary has committed to reviewing the financial support schemes. Is she able to confirm that other UK countries will co-operate with that review and, if not, that Scotland will, as with the Penrose inquiry, go ahead with its own review?
We have already initiated at official level discussions in which we want to talk about the review of the financial arrangements on a UK basis—not least because that is the basis on which the existing financial schemes are delivered. However, as I said yesterday to the people who have been affected and their families—and confirm again today—I am very clear that Scotland will not be held back if we cannot reach agreement across these islands on how to move forward. I strongly believe that we need to move forward, and I hope that we can reach agreement on that among the four countries of these islands. However, I am also clear that if we cannot do that, we will get on and do what is right for the people here in Scotland.
I pay tribute to those who have campaigned, and continue to campaign, on behalf of the people who have been affected by the scandal. The Penrose inquiry report highlights the fact that some parts of some patient records are missing. That causes a great deal of distress to patients and raises suspicions that the records have been tampered with. What is the cabinet secretary doing to address that and to identify what happened to the records and why?
The Penrose report looks into that matter in some detail; it has gone through a lot of information about the issue. We would be happy to look into other aspects that Penrose has identified in the report, even if they are not translated into a recommendation.
However, the focus and desire of the people who have been affected and their families is on support going forward. It is important that we focus our attention on that and on what more we can do to ensure that people are supported. Yesterday I heard some very difficult stories about the hardships that people are facing and how it has been more difficult than it should have been for people to get, through existing schemes, some of the basic financial support that they have needed. In my view, that is not good enough, so we should focus our attention on that: that will be my priority. Obviously there are other matters to consider, but we should really focus on the support requirements of the people who have been affected and their families.
Presiding Officer, I apologise to you and to the cabinet secretary for missing the early part of her statement.
One of the main findings in the Penrose report is that, at the time, doctors were very paternalistic and did not give relevant information to patients. How can we be sure that that is no longer the case?
That comes across in the Penrose report. The relationship that people had with clinicians in the 1970s and 1980s was paternalistic, and consent and informed consent were not recognised, as they are now, in relation to tests and test results. The NHS has moved on a long way—the relationship is now very much about recognising the patient’s rights, and about the requirement for their consent and that it be informed consent.
I acknowledge the journey that the NHS has been on since that time. The patient safety programme has dealt with many such matters and has ensured that we have a world-leading patient safety programme. We should be proud of that in today’s NHS, and we should recognise that we have been on a long journey since the days of paternalism in the past.
I also pay tribute to the campaigners, and acknowledge that the cabinet secretary and the First Minister have taken a close interest in the issue since the early days of the Scottish Parliament.
Does the cabinet secretary agree that an important part of the review has been carried out by the Scottish Infected Blood Forum in its HCV contaminated blood scoping exercise? Is the cabinet secretary minded to accept the recommendations of that exercise, remembering that one of them is that all the recommendations should be actioned within the current parliamentary session?
The forum’s scoping work has been important in giving the reference group a useful starting point. We discussed the forum today and said that it has been helpful in ensuring that the reference group can get under way and get on with the task in hand. We will certainly use the work of the forum to do that.
I thank the minister for her statement; I agree with all of it.
As the minister will be aware, I have worked with Haemophilia Scotland for the past few years; I pay tribute to the families, and to Bill Wright in particular.
I recently hosted a reception in Parliament at which “Factor 9”, a play portraying the disaster, was performed. Will the cabinet secretary ask the Health and Sport Committee to discuss the report urgently? Can time be allocated for discussion of the report after any action by the Health and Sport Committee?
I also saw “Factor 9”, which is a very moving and powerful play.
It will be for the Health and Sport Committee to decide what it does and whether it wishes to examine the report—it is not for me to guide the committee in that respect. I would be willing to make myself available to appear in front of the committee should it wish to consider the report. There is also the work of the reference group that will be happening thereafter. I will certainly make myself and my officials available for that.
As regards parliamentary time, I would be very happy to make time available at the most appropriate moment to revisit progress with the reference group as we begin to take matters forward. I am keen to keep Parliament well informed of progress.
I place on record my thoughts for the victims and families of those who have been affected, and I pay tribute to their dignified campaign. I also thank the cabinet secretary for advance sight of her statement.
Almost half of the people living with hepatitis C in Scotland are undiagnosed and only about 3 per cent receive treatment. The Hepatitis C Trust argues that it is a moral imperative that we find and diagnose people before they develop advanced liver disease. What is the Government doing to find those people who need to be diagnosed and to ensure that they are all provided treatment?
A lot of work has gone on over the years to attempt to trace people and to find people who are not diagnosed in order to offer them a test, thereby opening up opportunities for treatment and support. With the Penrose recommendations, there is an imperative on us to see what more we can do in that respect. We will be discussing the best way of taking that forward, so that we can pick up people who have not already been diagnosed.
That is very important. As I am sure Jim Hume knows, there is now a very different set of drugs and treatments available than there was previously. Getting people diagnosed and on to the most appropriate treatment is very important. I am happy to keep Parliament informed of the work that we undertake to do that.
Will the Scottish Government ensure that those who are living with hepatitis C due to contaminated blood get full and speedy access to the range of curative medicines that have been developed recently? I note that, quite often, the NHS does not prescribe some of those medicines until the late stage of hepatitis C, when the disease has been sitting in the body for a significant amount of time. Early access to curative medicines would be vital for many hep C sufferers.
Obviously, these are clinical judgments, and someone would have to be clinically suitable for any drug or treatment. With that caveat, I would say that it is very important that those who have been affected through the infected blood and blood products are given the opportunity to have those treatments, but they have to be clinically suitable, and that is a clinical judgment.
I have a constituent whose husband was a haemophiliac. He contracted hepatitis C through treatment and died young, having suffered immensely, not just from his condition but from a fear of stigma, which led to a desire for secrecy, and that brought further burdens to him and to my constituent. My constituent had hoped that Penrose would answer a simple question: why did it happen? Critically, were people infected after it was known medically that there was a serious problem with the contamination of blood? Could the cabinet secretary outline her response to that question? What can people such as my constituent do now in order to feel that they have fought hard enough to secure justice for their loved ones?
I recognise the pain of the member’s constituent and their family as well as that of many others. I met many affected people yesterday, and I was struck by their personal stories and testimony.
The Penrose inquiry allowed many people’s testimony to be put on the record and recorded. Penrose also looked back into many of the issues that Johann Lamont referred to about what was known and what action was taken or not taken. As an independent inquiry, it came to its conclusions. As I said in my statement, I recognise that, for many of those affected and their families, the conclusions do not meet their expectations and are not what they wanted the inquiry to come up with.
The best response that I can give to that is to get on with the action that is required to support those affected and their families in a better way, which is what those people want. That was the message that I got yesterday and today, and that is what I am determined to do, because there is absolutely a moral obligation on us to ensure that those who are affected have the proper and adequate support so that they can get on with their lives in more comfort than at present. That will be the focus of my attention in the next few weeks and months.
I pay tribute to the many families who have been involved, including those who are in the public gallery and throughout Scotland. Given what happened with HIV and hepatitis C, how can we be sure that the blood supply is safe and free from new infections that might emerge?
As I said in my statement, the processes for blood donation and the treatment and safety of blood are strictly controlled. The message that I want to give today is that, in Scotland and in the UK, we have some of the safest processes and products in the world. It is important that that message goes out, because I do not want anyone who has been reading or listening to the discussion about some of the really difficult issues in the Penrose report to be afraid of receiving blood or blood products in Scotland, or of giving blood. It is important that the message goes out that blood in Scotland is safe and that people should not be afraid to be a recipient of blood or blood products or, importantly, to give blood.
Does the cabinet secretary agree that what we are discussing is the biggest medically caused tragic event since thalidomide—arguably, it is bigger—and that we should all regret the fact that the process has taken so long? Even now, if more support beyond Labour’s ex gratia funding is put in place, many of the victims and their families may never have closure and, of course, the lives that have been lost can never be restored. New medicine is rarely risk free, so can the cabinet secretary indicate whether we have a firm timetable for a no-fault compensation scheme?
As I think that I said clearly in my statement, we are talking about one of the biggest tragedies to have faced our health service and those who receive treatment through it. As I have said, it is not me who has decided on the method and timescale for getting on with the review of the financial provisions—that has been decided in consultation with those who have been affected. They want to be involved in the discussions, they want to have ownership of them and they want a proper process. That is why the process that I announced in the statement has been driven by those who have been affected. It is critical that we listen to them.
The next step will be the reference group—we have had some discussions today about getting that under way—and then we will begin the detailed discussions on the financial provisions and whether we can move forward with that on a UK basis or whether we need to do something in Scotland. As I have said to other members, I am open minded about that. It will depend on the response from other parts of the UK. However, I am absolutely clear that we will not stand back from our moral duty to make the lives of those affected and their families better and we will not stall in getting on with that. Over the next few weeks and months, I will be focused on that to ensure that we deliver it.
That ends the statement from the cabinet secretary on the Penrose inquiry. Before we move to the next item of business, I say to members that I allowed the statement to run on naturally to allow everybody who wished to ask a question to do so and to get an answer. That means that we will be very tight for time for the rest of the afternoon, and I hope that members will bear that in mind.
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