The Parliamentary Under-Secretary of State for Health (Jane Ellison)
I thank the shadow Minister and the hon. Member for Central Ayrshire (Dr Whitford), the SNP spokeswoman, for granting me a little of their time to respond to many of the points made during this excellent debate. I congratulate members of the all-party parliamentary group on haemophilia and contaminated blood, in particular the hon. Member for Kingston upon Hull North (Diana Johnson), on securing the debate and on their campaigning work, to which tributes have rightly been paid. I also wish to thank those who have taken considerable time and trouble, and made considerable efforts, to travel down to London today to express their feelings to their Members of Parliament; some have been able to stay to listen to the debate. I am going to spend as much of my time as possible responding to as many of the factual questions I have been asked as I can, so let me move swiftly on to that.
The consultation on infected blood scheme reform seeks views on what a reformed scheme should look like. This is the first public consultation on this matter by a Government, although there have been other consultations led by parliamentarians. Obviously, it has attracted a lot of interest from Members, as indicated by the presence of those contributing today. I know that many Members, myself included, have had personal frustrations and concerns expressed to them over many years by constituents.
Members will appreciate that, as the consultation is still open, I am not in a position to give any commitments or guarantees on the shape of scheme reform today. Indeed, I want to reassure the House that no decisions on scheme reform will be made until the consultation has closed and all the responses have been carefully analysed. I have listened with keen interest to the various points that have been made and I will carefully consider the contents of this debate, alongside the responses to the consultation.
None the less, I am aware that there are some concerns—they have been expressed today—about the consultation and some of the proposals, and I will try to address those today. First, let me deal with any lack of clarity on the additional funding committed. To be clear, when I launched the consultation I announced £100 million of new funding for the scheme. That is in addition to the current spend of about £22 million per year and the £25 million announced by the Prime Minister in March 2015, so it will more than double our annual spend on the scheme in England over the next five years.
To date, we have spent more than £390 million on support for those affected, and the additional funds I have announced bring the budget for the next five years to £237 million. That means that, over the lifetime of the schemes, we project that more than £1 billion will be spent on support for those affected. The money comes from the Department of Health budget—I hear the points that have been made about where people think the money should come from, but that is where it is coming from and that is the funding we have been able to identify. We are more than doubling the budget for the next five years. This financial assistance is voluntarily provided by Government to help those infected and their dependants. I wish to ensure, and the key aim of the scheme is to ensure, that the money is distributed in a fair and equitable way within that budget envelope and within the legal framework within which I am working, in a way that is also sustainable for the future.
With that in mind, I want to emphasise to Members and to the House that this is a truly open consultation; I genuinely want to hear from all those who have been affected. It has been very useful for me to hear the points made in this debate. I want to hear what support would be most beneficial within the parameters I have set out.
To give some idea of how widely we reached to try to get responses to the consultation, I should say that letters have been sent to all 3,482 registrants of the existing schemes to make them aware of the consultation and provide them with details of how to access it. Letters were also sent to almost 180 Members who have at various times, by various means, contacted us on behalf of constituents over the past year or so, and they have been urged to respond, too. We have already received more than 1,200 responses to the consultation, and I hope that reassures some Members, including the hon. Member for Hammersmith (Andy Slaughter), who were worried that people might have found the consultation difficult to respond to. That is a very good level of response and it is enormously helpful. I am very pleased that so many people have taken the time to feed their views into the process. It might be helpful and, I hope, reassuring for Members to know that a specific team in the Department has been established to ensure that every response is read in full and captured in the analysis, and given that respectful hearing to which one Member referred.
It has been very valuable in the contributions to the consultation we have already received to hear from the quieter voices in the affected community that I have spoken of before. Indeed, I have been struck—in some ways shocked—by the number of affected individuals who were not aware of some of the support potentially available to them, such as the discretionary financial support and non-financial support provided by the three charitable scheme bodies. That has reinforced my sense, which I think is shared across the House—I say that especially in the light of today’s debate—that scheme reform is necessary, especially with a view to simplification and transparency. That point was put very ably by the hon. Member for Heywood and Middleton (Liz McInnes). There are still a few days left in which to submit responses, and I encourage anyone who has not responded but would like to do so to respond before midnight on 15 April.
Let me turn to some of the proposals in the consultation. I know that some of the charitable scheme bodies wrote to their beneficiaries to help clarify the consultation proposals, but some of the nuances were lost in the letters. A number of speakers, including my hon. Friend the Member for South East Cornwall (Mrs Murray), have reinforced that point. Let me confirm that the crux of the consultation is the proposal that every chronically infected individual would, for the first time, receive an annual payment under a reformed scheme. At the moment, those who are registered with the Skipton Fund at hepatitis C stage 1—that is 2,424 people, which is more than 70% of the total number of infected registrants—are not eligible for annual financial support. We are proposing a new annual payment for everyone in that group, reflective of the level of ill health they experience. Should the proposal be taken forward, we anticipate that a large proportion of the additional money committed will be used to provide these new payments.
The proposed reforms would continue annual payments to those who currently receive them, which is, approximately 840 people. Those who are currently registered with the Skipton Fund at hepatitis C stage 2, and those with HIV registered with MFET Ltd would have their payments increased to a rate of £15,000 annually, and those co-infected with HIV and hep C would benefit from an uplift to £30,000. That means that, over the next 10 years, someone with hepatitis C stage 2 would receive £150,000 in addition to any payments they have received to date. Someone co-infected would receive £300,000 in addition to the support they have already received. None of those payments is taxable, nor does it affect a person’s entitlement to any state benefits.
There has been mention of the link to the consumer prices index. I know that there is some concern about the proposal to remove the linkage to CPI. CPI linkage can result in an annual increase or, in theory at least, a decrease in payments. This year, CPI was negative, but we decided to freeze payments to ensure that support for infected individuals did not decrease as a result. Fixing the payments at a set rate would provide more financial certainty over this spending review period for those receiving annual payments. However, I will take very careful account of the concerns that have been raised in response to the consultation when making my final decision on this matter.
Norman Lamb
The Minister has explained that many people will benefit, but will there also be losers? If there are, will she write to confirm how much they will lose by and how many people will be involved?
Jane Ellison
I cannot give the right hon. Gentleman that clarity today, and there is a specific reason for that.
I will move on to discretionary support for infected individuals. Obviously, I have heard the concerns—I have had a number of letters and held a number of meetings. Some people came to the surgery that I organised. The hon. Member for Kingston upon Hull North was not able to make it, but other Members came and talked about this point. In the consultation, we did propose providing discretionary payments only for travel and accommodation costs. We addressed this issue because, prior to launching the consultation, one of the main criticisms of the current system raised by different groups of beneficiaries and their MPs and by the all-party group was that discretionary grants and the process of applying for them was “demeaning”.
However, I am aware that, through the consultation responses, a number of beneficiaries are troubled by the consultation question on discretionary payment, and those voices have been heard today. In principle, discretionary support should be means-tested, which means that it will vary with circumstances over time. However, it has become clear that, through the independent charitable schemes, a relatively small number of individuals are receiving regular and significant levels of discretionary—as opposed to regular—support. I encourage anyone who feels that they are in this position, or would lose out as a result of the consultation proposals on discretionary support, to reply to the consultation explaining that. No decisions have been made about some of the other discretionary elements on which Members have touched. I hope that clarifies the distinction between our assessment of the impact of annual payments and the impact of discretionary payments, some of which could not be known to us because they were put out through independent charitable schemes.
I welcome any suggestions that respondents may have in relation to the proposals and what would be of benefit to them. This, along with the rest of the consultation responses, will help us to decide what we might be able to do within the budget. We are well aware that some of the non-financial elements of support, which are currently provided by the charitable schemes, are valued. I want to reassure colleagues that we are entirely open-minded about this provision. As I have emphasised previously, it is up to people to tell us through the consultation what they most value in that non-financial support.
Let me touch on the Scottish reforms. Clearly, that has been quite a key theme today. I have been asked to consider matching the recent reforms. The Scottish Government established a financial review group, as we heard, and they announced their plans on 18 March. The package announced by the Scottish Government differs from the proposals on which the Department is consulting. One major difference is in relation to annual payments provided to infected individuals. The Department of Health proposals for England are intended to ensure long-term stability and security to all infected individuals. The hon. Member for Newport East (Jessica Morden) made a point about long-term security and sustainability. To reiterate, in England, there are about 2,400 individuals with hepatitis C stage 1 who do not receive any annual payment. Our proposal is to provide a new ongoing payment to all those individuals that reflects the level of ill health that they experience. The Scottish Government have chosen to provide a lump sum payment.
Jane Ellison
I am really sorry—I will barely get through the points that I have to make.
Sir Gerald Kaufman
Is the hon. Lady going to answer the questions that I put to her?
Jane Ellison
I am sorry. I have made a note in the margin of my speech to respond directly to the point made by the right hon. Gentleman, if I can get to it. I will try to deal with all the points that were made, and if I do not, I will write to Members after the debate.
The Scottish Government have chosen to provide a lump sum payment, and they currently have no proposals for annual payments to the hepatitis C stage 1 group. To give an idea of the difference, in England, over a five-year period, a stage 1 hep C sufferer who currently gets nothing but is awarded the highest proposed annual payment of £15,000 would receive £75,000. Officials from the Department of Health and the Scottish Government continue to exchange views on scheme reform, and we will reflect on the points that have been made today.
Let me touch briefly on the point about Wales and Northern Ireland. It is a matter for the Welsh and Northern Irish Governments to decide how support is provided for those infected in their areas, but they could opt to make the same reforms as the Department of Health and, indeed, participate in some administration arrangements following scheme reform. My officials hosted a meeting on 24 March with officials from each of the devolved Administrations to discuss scheme reform, and they will continue to work with their counterparts from the DAs on that.
Let me touch on treatment. I understand the points that have been made. Since I launched the consultation in January, the NHS has committed to doubling the number of patients treated with new therapies to 10,000 in 2016-17. NHS England has allocated £190 million from its budgets for 2016-17 for rolling out treatment with these new therapies. I will take into account this significant recent development, along with the responses to the consultation, when making decisions on treatment and payment for it from the scheme’s allocated fund when the consultation has closed. I have noted the clear steers Members have given me about treatment being taken forward by the NHS. I emphasise, however, that legally, the NHS cannot prioritise patients according to route of infection, and can only do so according to clinical need, as Members will understand.
Turning to where we go next, the outcome of the consultation will be crucial in informing our final decisions on how to proceed. We will analyse and reflect on all the responses, and although the scheduling of a debate is not in my gift I will seek to provide an opportunity for colleagues to discuss the proposals with me before any final decisions are made. I will continue to keep Opposition Front-Bench teams closely informed, as I have sought to do throughout. I give the House, and those affected, my commitment that we will proceed as rapidly as possible to implementation. However, I recognise that any reforms must be implemented in a measured way, to give those affected time to adjust, and at the same time ensure that there is no disruption to the provision of ongoing support.
I said when announcing the consultation that my intention was that the new annual payments for the current stage 1 cohort should be backdated to April—this month—regardless of when an individual’s assessment took place. I stress that we are very keen that any assessment is simple and light touch. We do not anticipate any interaction with the benefits system, but I will raise with the Department for Work and Pensions the points made by the hon. Member for Denton and Reddish (Andrew Gwynne) in his thoughtful contribution. We are aiming for simple, light-touch assessments every few years, and if someone’s health deteriorates we want to be able to respond appropriately.
I have tried to address some of the concerns, but I am conscious that I have not covered all of them. After the debate I will review them and respond if I can. I hope the right hon. Member for Manchester, Gorton (Sir Gerald Kaufman) will appreciate that I am not able to answer the points that he raised before the end of the debate.
The consultation will be genuinely open and I urge everyone with an interest to respond. I hope to take matters forward in a constructive and open way.
