Infected Blood

Jane Ellison Excerpts

Thursday 21st January 2016 Commons Chamber

[The Parliamentary Under-Secretary of State for Health (Jane Ellison)]

In the urgent question on 16 December, I committed to publishing the consultation on infected blood scheme reform in January. I am pleased, therefore, to announce the launch of that consultation. I recognise that for some this will come too late. I cannot right the pain and distress of 30 years, and the truth is that no amount of money could ever make up for the impact that this tragedy has had on people’s lives. As I have said before, for legal reasons, in the majority of cases, it is not appropriate to talk about compensation payments, but I would like to echo what has been said before in the House and say sorry on behalf of the Government to every person affected by this tragedy.

Scheme reform is a priority for me and the Government, and for that reason I can announce that the Department of Health has identified £100 million from its budget for the proposals in the consultation. This is in addition to the current spend and the £25 million announced in March 2015, and it will more than double our annual spend on the scheme over the next five years. This is significantly more than any previous Government have been able to provide for those affected by this tragedy.

I know all too well of the ill health and other impacts on many of those affected by the tragedy of infected blood. I have corresponded with many of those affected and their MPs—they each have their own story to tell—and I have reflected carefully on all this in developing the principles on which the consultation will be based. These are: that we focus on those infected; that we can respond to new advances in medicine; that we provide choice where possible; and that we maintain annual payments to everyone currently receiving them. The consultation is an opportunity for all those affected to have their say, and it is important that it extends to the quieter voices from whom we hear less often.

It is not appropriate, and I do not have time, to go through the whole consultation document today, but I would like to highlight some of its key components. A large population within the infected blood community currently does not receive any regular financial support. These are the people with hepatitis C. I believe it is important that everybody receives support from the new scheme and that it be linked to the impact infection has on their health. I therefore propose that all those registered with the schemes with hepatitis C at current stage 1 be offered an individual health-based assessment, completion of which would determine the level of annual payment received. This would also apply to anyone who newly joins the scheme.

The consultation document outlines our proposal that those currently receiving annual support should have their payments uplifted to £15,000 a year. Those who are co-infected and currently receive double payments would continue to do so. I often hear that people are unhappy about applying for discretionary charitable payments. I hope that the introduction of new regular annual payments will remove this requirement. I am keen that those who respond to the consultation take the opportunity to answer all the questions about the support proposed so that I can make informed final decisions on the shape of any new scheme once all the responses have been collected and analysed.

During the urgent question, I said I was interested in the opportunities offered by the advent of simpler and more effective treatments that can cure some people of hepatitis C. The NHS is at the start of its programme to roll out the new hepatitis C treatments previously approved by the National Institute for Health and Care Excellence. As Members will know, the NHS must prioritise treatment on clinical need and not on route of infection, which means that, although some in the infected blood community will be eligible for treatment right away, others might have to wait.

More than anything, I want, if we can, to give the chance to limit the impact of hepatitis C on the infected community by making an offer of treatment. Over recent months, I have received many letters from people expressing a wish to halt the progress of their infection—one of the many letters that particularly struck me asked simply: “Please make me well”—so my intention is that the new scheme will provide an opportunity to enhance access to treatment, especially for those who fall just short of the current NHS criteria. I hope that we can treat more people if finances allow. That is why the consultation is seeking views on offering treatment to those with hepatitis C in the infected blood community not yet receiving treatment on the NHS.

In keeping with the principle of offering choice where possible, I am pleased to announce that we are consulting on a choice of options for the bereaved. Currently, bereaved partners or spouses are eligible to apply for means-tested support from the charities. As I have said, I have heard concerns from many people who do not like having to apply for charity. With that in mind, the consultation offers the choice of continued access to discretionary support or a one-off lump-sum payment for the bereaved based on a multiple of their current discretionary support. There are questions on this in the consultation document, and I am keen to hear from those affected so that I can understand their preference.

Having listened to concerns about the complex nature of the five schemes, the consultation proposes that, following reform, there will be one scheme run by a single body with access to expert advice, including from National Institute for Health and Care Excellence, so that we can keep pace with any new advances in treatment for hepatitis C and HIV that emerge.

On the next steps, the consultation will be published today on gov.uk and will run until 15 April. This is a 12-week consultation to ensure that all those who wish to respond have time to do so. The consultation document contains questions about the proposals on which I would welcome views. I recognise that there has been disappointment that we have not consulted sooner, but the outcome of the consultation will be crucial to informing our final decisions about how to proceed, and I give the House, and those affected, my commitment that we will proceed as rapidly as possible to implementation thereafter.

We need, as a priority, to make progress in rolling out the health assessments as quickly as possible to ensure that people get access to the support and clinical advice they need. I should be clear, however, that my intention is that annual payments for the current stage 1 cohort should be backdated to April 2016, regardless of when each individual’s assessment takes place.

This is the first time that the Government are consulting fully and widely with the entire affected community and all those who might have an interest on the future reform of the scheme. In developing the proposals to include within the consultation, I have taken account of points I have heard in debates here, of correspondence sent to me, of my discussions with the all-party group and of views gathered during pre-consultation engagement. The consultation is now open and it is my hope that all those affected by this tragedy will respond, and that we can move forward from here. I commend the statement to the House.

[Andrew Gwynne (Denton and Reddish) (Lab)]

I thank the Minister for her statement and particularly for advance notice of her intention to give it and for providing me with early sight of it.

I appreciate that this is a difficult issue, but I think that the Minister’s approach today has been the right one, and we will welcome what she has said. She was right to apologise on behalf of the Government, and I would like to echo that apology, because successive Governments of all colours have failed to respond adequately to this scandal. In many ways, this failure has only deepened the injustice felt by the victims.

I want to pay tribute to all Members who have been a strong voice for the victims of contaminated blood. I would like to mention, in particular, my hon. Friend the Member for Kingston upon Hull North (Diana Johnson), the hon. Member for Worthing West (Sir Peter Bottomley), my hon. Friend the Member for Hammersmith (Andy Slaughter), the hon. Member for South Down (Ms Ritchie), the right hon. Member for North East Bedfordshire (Alistair Burt) and indeed my right hon. Friend the Member for Leigh (Andy Burnham).

This scandal saw thousands of people die, and thousands of families destroyed through the negligence of public bodies. Although the Minister was absolutely right to say that no amount of money could ever make up for the impact this tragedy has had on people’s lives, we all owe to those still living with the consequences the dignity of a lasting settlement. With that in mind, I want to press the Minister on four points.

First, on funding, it was claimed that one reason for delaying the announcement of this consultation was to achieve clarity about how much funding would be available, following the comprehensive spending review. The Minister appeared to announce an additional £100 million for the new scheme, so for further clarity, will she set out the total amount that will be available over the lifetime of the new scheme, and how that compares to the previous scheme?

Secondly, we welcome the fact that the consultation will offer the choice of a one-off lump sum payment for the bereaved, but will the Minister say a bit more about how that might be implemented? As she knows, these payments will enable choice, and it is important that we get this right.

Thirdly, will the Minister say a bit more about widows and widowers? She will know that the Scottish review group recommended that widows should get some form of pension for the first time. Has she considered this option? It is important to recognise that widows and widowers are suffering not only from an immediate loss of income from their partner, but from the inability of their partner to save for a pension or get life insurance over the past few decades.

My final question is about the status of hepatitis C sufferers who have not developed liver cirrhosis. We welcome the possibility of ongoing payments, but can the Minister say how the assessments will work? In particular, it is important that these assessments take account of the longer-term health impacts of living with hepatitis C. Does the Minister have any figures on how many of these individuals will not have access to the new hepatitis C treatments? Given that the NHS made these people ill, and the NHS has the drugs available to help these patients, it does seem wrong that we are denying some of these people treatment—the treatment that they both need and, frankly, deserve. Will the Minister say a bit more about how the Government intend to improve access to treatment specifically for these individuals?

I hope that everyone affected will be able to take part in this consultation and have their say on the future reform of the scheme. The Minister will have our full support in implementing that new scheme and doing what we can to provide relief for the victims of this terrible injustice.

[Jane Ellison]

I thank the shadow Minister for responding in those terms. It is much appreciated. As he says, we all want to try to move forward with a consensus in support of the people affected by this tragedy. I will try to respond to his questions, although I might have to write to him on one of them because my on-the-spot maths is not quite good enough.

On funding, as I have made clear several times before, the money will come from the Department of Health budget, and we have identified an additional £100 million over this spending review period, which allows us to double the current spend on the existing schemes. This is in addition to the £25 million announced in March 2015. Spend to date is £390 million and the projected future spend is £570 million, so together with the £100 million and the £25 million, that amounts to more than £1 billion over the lifetime of the scheme. I hope that provides the hon. Gentleman with some clarity on funding.

The hon. Gentleman asked about lump sums. It can be seen in the consultation documents that we are consulting on options for both those already bereaved and those who will be bereaved in the future, and we are asking people how they feel about continuing with a discretionary approach or taking a one-off payment that would be based on a multiple of the discretionary payment they get in the current financial year—or indeed a hybrid of the two. We are trying to be as open as possible, so people can give us their views on how they see the way forward.

I have seen the Scottish proposals and I had a conversation with my opposite number in Scotland this morning before I came to the House. Because one of the options for bereaved people is an ongoing payment, albeit a discretionary one, I would not compare it with what I understand the reference group in Scotland has put forward as a pension. Obviously, we are talking about access to ongoing but discretionary payments. Again, I look forward to hearing the views expressed during the consultation on that issue.

It might be helpful for Members to know that 160,000 people in England have hepatitis C. Those affected by this tragedy make up fewer than 2% of the hepatitis C population in England. The NHS has to treat people on the basis of clinical need. The treatments are in the region of £40,000 each—quite expensive treatments. However, we believe more treatments are in the pipeline, which is one reason why I am so keen to ensure that clinical expertise is embedded within the new scheme. We are particularly keen to understand, in respect of the people who do not quite reach the current NICE guidelines for rolling out treatment in the NHS, whether, by recognising the unique circumstances of the people affected by this tragedy, we can do something within the scheme to support them. We need to understand how many people will be interested. Members might find it helpful to know that while not every genome type of hepatitis C is susceptible to the new treatment, the majority, thankfully, are. For some people, none of the new treatments is clinically appropriate.

I think I have dealt with the key questions that the hon. Gentleman asked me. I would be happy to carry on working in the spirit in which he responded to my statement and come back to him with any further clarity that he seeks subsequent to this debate.

[Maggie Throup (Erewash) (Con)]

I thank the Minister for her statement and for the measures she has outlined today, as well as for her continuing commitment to seek justice for the victims of contaminated blood, including some in my constituency. When it comes to looking at drugs for the future, will the Minister commit to continuing investment in molecular diagnostics as the way forward for victims in the future?

[Jane Ellison]

The Government and the NHS have made it very clear that we greatly welcome what we see as a rapidly changing landscape. There is huge commitment on this issue. I am joined on the Government Front Bench by the Under-Secretary of State for Life Sciences, my hon. Friend the Member for Mid Norfolk (George Freeman), who is doing a great deal to accelerate some of the newest treatments and their adoption within the NHS. I can absolutely give that commitment that we always want to stay at the cutting edge of medicine. One reason for delaying this consultation, perhaps to the frustration of some, is that we now have a fuller picture of the current state of the available treatments. The last three treatments that are to be rolled out in the NHS were not approved by NICE until 25 November. I want to ensure that we are always up to date with the treatment landscape as it evolves, as we hope it will continue to do.

[Dr Lisa Cameron (East Kilbride, Strathaven and Lesmahagow) (SNP)]

We understand the terrible situation of those who have been affected by the infected blood tragedy, and empathise greatly with them. It is imperative that we take every possible action to compensate where we can, although no amount of money can truly compensate the individuals whose lives have been affected.

It appears from the Minister’s statement that what is being proposed is a step in the right direction, but we must focus on the needs of those affected, offer choice, and ensure that there is medical advancement and evidence-based practice. I understand that payments are made through a United Kingdom scheme, but there is clearly considerable involvement on the part of Health Departments in devolved Administrations.

Let me end by reiterating our support for those affected, and by asking the Minister what discussions she has had with devolved Administrations about consultation arrangements, scheme reform, payments including those recommended for widows or widowers, and other support that is urgently required.

[Jane Ellison]

The consultation is being undertaken by the Department of Health in England, but anyone in the United Kingdom can respond, and we continue to work with all the UK Health Departments. My officials have been working closely for months with officials in devolved Administrations. I offered to speak to my ministerial counterparts on the phone this morning, and had a helpful conversation with both Shona Robison and the Welsh deputy chief medical officer. I note that the chief medical officer for England also contacted her opposite numbers.

As I have said, we are in touch with all the devolved Administrations. Because health is now a devolved matter, they are responsible for providing financial support for those affected in each country, and I know that Scotland is consulting on scheme reform in its own right. However, all the devolved Administrations will have the option of joining our new scheme in the future, and an assessment will be made of the financial contribution that is necessary. I had a useful conversation with Shona Robison about some of the transitional arrangements, and about how we can work together. I said that we would try to be as helpful and supportive as possible, and I have every confidence that we will continue in that spirit.

[Chris Heaton-Harris (Daventry) (Con)]

I welcome the statement, I welcome the consultation, and I certainly welcome, on behalf of my constituents, the extra money that seems to be available.

The Minister has said that she wants the widest-ranging consultation. Every Member will have received letters from their constituents about this issue, and those letters have been have passed on to the Department. My constituent Matthew Harris, for instance, has been campaigning actively for a very long time. Will the Department be able to contact those constituents, and ensure that those who are directly affected, and with whom the Minister has already been in contact, can take part in the consultation?

[Jane Ellison]

I assure my hon. Friend that we will make every effort to reach people. My officials have already put in place extensive plans to publicise the consultation—they have met the heads of the charities and those running the current schemes, and will be writing to those who are registered with those schemes—and we will make it as easy as possible for people to get involved. One of our reasons for organising a 12-week consultation is that we recognise that some people may not be online, and we want to make sure that everyone has a chance to comment.

I will reflect on what my hon. Friend has said about direct contact. That may already be being pursued through some of our plans, but, as I have said, we have extensive plans to publicise the consultation, and it goes live today. Of course I shall welcome Members’ contributions on behalf of their constituents.

[Diana Johnson (Kingston upon Hull North) (Lab)]

I thank the Minister for her statement. I am sure that the all-party parliamentary group on haemophilia and contaminated blood will want to study the details in the coming weeks, and to take part in the consultation.

At first glance it appears that the Minister’s proposals are not as generous as those that are being discussed in Scotland, although I accept that as yet the Scottish Government have not accepted those proposals. However, I want to raise the specific issue of health assessments of those who are in stage 1 of hepatitis C. A number of those people have been living with the condition for a great many years, and even if their viral load is now cleared, they will not be able to resume their lives as if they had never been infected. Will the Minister assure me that that will be taken into account in any health assessments and in any subsequent financial arrangements?

[Jane Ellison]

Let me first thank the hon. Lady for all the campaigning work that she has done, for which she has rightly been recognised by others. Although we have not always been able to agree on everything, I have been greatly informed by what she has brought to our discussions, and I take on board many of the reports that the all-party group has produced over the years.

The recommendations that are being discussed in Scotland were made by a reference group and not by the Scottish Government, who have yet to respond to them. Shona Robison indicated that they would respond in due course, but that, obviously, is a matter for them.

It is a little too early to specify exactly how the individual health assessments will be carried out, but we will be asking an expert advisory group to advise on the criteria and the evidence. As I said in my statement, it is a question of recognising the impact of ill health, and also the fact that some people’s health fluctuates. I think that we can be assured that everyone will be included in the scheme, and that everyone will receive an annual payment. I should add that we expect people’s own clinicians to be involved in the individual assessments.

[Chloe Smith (Norwich North) (Con)]

I welcome the Minister’s personal determination to see this through, and the progress that she has already achieved. I know we all agree that it has long been needed. I welcome the Government’s apology, the level of funding that has been secured, the format of the annual payments, and, in particular, the backdating offer. However, may I also urge the Minister to focus on fulfilling her promise of treatment for hepatitis C at every level of the NHS? A great deal of bureaucracy lies ahead, and our constituents have no appetite for putting up with it.

[Jane Ellison]

I thank my hon. Friend for what she has said. I am glad that she feels that we are making progress.

The NHS is just beginning to roll out many of the new hepatitis C drugs, although some people have already been treated, and obviously many more will be treated in the future. One of the benefits of individual health assessments for everyone in stage 1 of the scheme is that we shall be able to understand not just clinical need, but problems such as those described by my hon. Friend. The consultation may help us to establish whether help with navigating the health system is one of the non-financial aspects of support that people might seek.

[Norman Lamb (North Norfolk) (LD)]

I thank the Minister for her statement, and welcome the consultation. It is an important step forward.

The individual health assessment clearly marks quite an important moment for people with hepatitis C—a condition that other Members have raised—because the Minister has talked about linking it to payments. Does she envisage an entirely discretionary payment linked to the assessment, or a system involving payment bands? How will the scheme work, and will there be a right of challenge? What does the Minister mean by “enhanced” access to treatment? Is there still a risk that some people will not have immediate access to it?

[Jane Ellison]

As have I said, we will ask an expert advisory group to consider what the criteria for the health assessments should be, and we expect people’s own clinicians to be involved. Broadly speaking, we probably envisage payment bands, but that too will be subject to the consultation. We want to be able to combine speed and fairness.

People with hepatitis C are receiving NHS treatment based on NICE guidelines, but we understand that there will always be people who fall a little short of that at any one time, and we hope to be able to offer treatment to them within the scheme. Within the overall envelope of funding, however, we will not know exactly what the balance is until after the consultation. I do not know what affected individuals’ views are about the balance between treatment and some of the other options in the consultation. I genuinely want to see what they think, and how attractive the treatment offer is to them, before we reach our final conclusions.

[Mr Geoffrey Cox (Torridge and West Devon) (Con)]

I thank the Minister for the work she has been doing on this issue. I also thank her and her ministerial colleague my right hon. Friend the Minister for Community and Social Care for the impressive way this is being handled. We should never forget that this is a simple matter of justice, and it is time, after all the apologies, that those affected should feel we are doing justice to that injustice. I hope that my hon. Friend will agree with me that one of the important needs is that any scheme should be simple, comprehensive, predictable and consistent, and that it is absolutely essential that the bewildering variety of current provision is resolved into that single clear scheme. Will she give me the undertaking that, whatever emerges at the outcome of this process, that will be the Government’s abiding priority?

[Jane Ellison]

I certainly think I can give my hon. and learned Friend some comfort in that regard. The area on which there was the greatest consensus right across the infected blood community and this House is on precisely what he describes: the complexity of the schemes and the fact that they are a mixture of regular payments and discretionary means-tested payments. Obviously we need to wait for the end of the consultation to see exactly what everyone’s views are, but we will not waste time. We will begin a scoping exercise on scheme reform while the consultation is under way in anticipation of finalising plans at the end of the consultation. I agree that we need a scheme that is straightforward, simple and sustainable, both giving regular support to those infected and allowing this Government and future Governments to be able to plan and sustain the support.

[Stephen Doughty (Cardiff South and Penarth) (Lab/Co-op)]

Like many other hon. Members, I have met constituents who have been affected by this tragedy, and it is a simple matter of justice that needs to be righted, so I welcome much of what has been said from both Front Benches today. Has the Minister met or spoken to the Welsh Health Minister over the past few days to discuss the matter and how it will operate in Wales, specifically with regard to financing and the availability of the drugs? Will Welsh sufferers have to travel to England to take part in the assessments or will arrangements be made for them to take place in Wales?

[Jane Ellison]

One or two of those questions are probably a little too detailed to comment on now, but it is worth reiterating what I said about the devolved Administrations. I have not been able to speak to the Welsh Health Minister; we offered the opportunity of a call with other Ministers, including the Scottish Minister, but the Welsh Minister knows that he can get in touch. One of his officials was on the call this morning, and our offices have been talking to each other. I am happy to pick this up with the Welsh Health Minister if he wants to do so.

This consultation is for the scheme in England, but we have been working with counterparts in the devolved Administrations. While everyone in the UK is welcome to respond to the consultation and say what they think, health is now a devolved matter—that is different from when the first schemes were set up—so the devolved Administrations are responsible for providing financial support for those affected from each country. Treatment within the NHS is obviously a matter for the NHS in Wales, and I will look at some of the other points the hon. Gentleman made. We are happy to talk to him about the devolved aspects and write to him afterwards.

[Andy Slaughter (Hammersmith) (Lab)]

I thank the Minister for the consultation, the additional money, the scheme consolidation and the work that both she and the Minister for Community and Social Care have undertaken. I also thank, of course, the all-party group and my hon. Friend the Member for Kingston upon Hull North (Diana Johnson). Will the Minister concede that, for those of us who have worked closely with individual victims for a number of years, the resolution has to be, as far as possible, to put them in the financial position they would have been in but for the grievous harm done to them, and that that may in some cases mean a bespoke solution for individual victims—we are not dealing with unlimited numbers of people here?

[Jane Ellison]

That is clearly the hon. Gentleman’s view and I invite him to submit it to the consultation. This is exactly why we are consulting. We have made some proposals, but some of the questions are very open, and we will look at what comes back from the consultation. I urge him and other Members to take part in the consultation.

[Mark Durkan (Foyle) (SDLP)]

I welcome the statement and commend the shadow Minister’s tone. Victims in Northern Ireland share the compound frustration that we have heard from other Members on behalf of their constituents, but maybe feel more pointedly the contrast with their friends in the south of Ireland, who have had a path of justice available to them over many years. I know the Minister is absolutely sincere in her commitment to the issue of treatment, but will she give assurances that the effort she is putting into making sure people can be made well will not detract or distract from the obligation we still have to make good this travesty that people have suffered?

[Jane Ellison]

I thank the hon. Gentleman for that question and his sustained interest over such a long time, speaking on behalf of people from his area. Based on our previous conversations, I recognise there might be aspects of the proposals that the hon. Gentleman does not feel meet his own aspirations, so again I invite him to respond to the consultation. I will take note of his—and all other Members’—views. These are our proposals. Some of the questions are very open and people can give us their views. I recognise that something different happened in the Republic of Ireland, and it is down to another Government to make those decisions. The circumstances were different for reasons I have gone into previously from this Dispatch Box.

[Valerie Vaz (Walsall South) (Lab)]

The Minister will know that some of the cases go back many years and the medical records may have been destroyed. Can she say in a little more detail what evidence is required both at the assessment stage and for those applying to the discretionary fund?

[Jane Ellison]

In truth, it is a little too early for me to give that level of detail. We want to ask for expert advice on that in order to get it right and, as I said in the statement, we are looking at the impact on people’s health now. We do not want this to be an invasive or onerous process for the people, who have gone through so much already, so we envisage involving people’s own clinicians as well as gathering other evidence. This is something we will ask experts to advise us on and we will come back at the end of the consultation.

[Jim Shannon (Strangford) (DUP)]

I commend the Minister for her work on this and thank her for her statement today. We know her as a compassionate person totally committed to this case; I do not think that anyone in the House has any doubts about what she is trying to deliver, and we thank her for that.

Some 7,500 people have been contaminated by blood. Last year, the Prime Minister gave a commitment of £25 million and this morning the Minister has given a commitment of a further £100 million, which is good news. Some 10 people have passed away. The European Commissioner for Human Rights has recently ruled that Italy must pay compensation immediately to all those who received contaminated blood. I know there is a consultation process, but when will we see the money actually getting to the victims? Is there a timescale? There has not been any commitment, as I understand it, with the Northern Ireland Assembly and the Minister, Simon Hamilton. What, if any, discussions have taken place?

[Jane Ellison]

As I set out earlier, we offered a phone call this morning with the Minister in Northern Ireland, but I am more than happy to pick up on that. Our officials have been working quite closely together for some time on this, so I am more than happy should my opposite number want to have a conversation. The circumstances in Italy are different and, as I said in answer to the last question, other Governments must make decisions for themselves. I am aware of that case, but I think some of the circumstances are quite different. On timescale, our priority is to move forward the individual health assessments, and at the same time we will do some scoping work around reform of the schemes themselves. I cannot yet say how long that will take, but I obviously want to do it as quickly as possible. As I mentioned in my statement, I want to reassure Members that whenever we undertake those assessments, people will not miss out just because they are towards the end of the process. We will backdate all those annual payments, once they are awarded, to April 2016.