Contaminated Blood and Blood Products

Diana Johnson Excerpts

Thursday 24th November 2016 Commons Chamber

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

I beg to move,

That this House notes the Government’s recent announcement on the reform of the support schemes for people affected by contaminated blood and blood products; recognises that the contaminated blood scandal was one of the biggest treatment disasters in the history of the NHS; believes that those people affected should have a reasonable standard of living and not just be removed from poverty; is concerned that bereaved partners of people who died with HIV/AIDS and those reliant on regular top-up payments will be worse off; is concerned that the new payments for people infected with Hepatitis C are not commensurate with the pain and suffering caused; notes that people who were infected with other viruses, those who did not reach the chronic stage of Hepatitis C and bereaved parents are not mentioned in this announcement; and calls on the Government to use the funds from the sale of Plasma Resources UK to bring forward revised proposals that are properly funded and which provide appropriate support to all affected people.

I thank Members of the Backbench Business Committee, who, since the Committee was established, have always been very generous in recognising the importance of this issue to many of our constituents. This is the third Backbench Business debate that we have had on the subject.

It is more than 45 years since the first people were infected with HIV, hepatitis C and other viruses from NHS-supplied blood products. Their lives, and those of their families, were changed forever by this tragedy. The contaminated blood scandal is now rightly recognised as a grave injustice—the worst treatment disaster in the history of our country’s health service—but those affected are still waiting for a proper financial settlement that recognises the full effect that the scandal has had on them and on their families. This group of people have campaigned for far too many years for justice, at the same time as dealing with illness and disability.

The current financial support for those affected is simply not fit for purpose. That stark fact was laid bare in the inquiry of the all-party group on haemophilia and contaminated blood in January 2015. This quote is on the first page of our report:

“You can’t give us back our health. But you can give us back our dignity. This tortured road has been too long for many of us. But for the rest of us, please let this be the final road to closure.”

Thankfully, we all now agree that the current support arrangements cannot continue, and that we need to create a scheme that gives this community back their dignity.

I welcome the efforts made by the former Prime Minister when he was in office. I welcome the Under-Secretary of State for Health, the hon. Member for Oxford West and Abingdon (Nicola Blackwood), to her new post and I welcome Lord Prior of Brampton to his new position. I was happy to meet him last week, alongside other APPG members, to discuss the new support arrangements.

Although we are all agreed on the need for a reformed scheme, I cannot agree with the Department of Health that its proposed settlement is sufficient. The purpose of this debate is to highlight the aspects of the new support scheme that will not provide the support that these people need, following the hasty announcement made by the former Prime Minister as he left office in July 2016.

In my speech, I want to stress five key issues that the Department of Health urgently needs to address. The first issue concerns the differences between the country schemes in Wales, Scotland and Northern Ireland. We need to know what support people in all four countries of the United Kingdom will get. While Scotland and England have set out their own separate support schemes, in Wales and especially in Northern Ireland people desperately need some certainty about the help they will receive.

[Ms Margaret Ritchie (South Down) (SDLP)]

I thank my hon. Friend for securing this debate along with other right hon. and hon. Members. I have been in touch with the Minister for Health in Northern Ireland and there has been no progress on this matter. I and other hon. Members from Northern Ireland have constituents who have suffered from the ill effects of contaminated blood for over 45 years.

[Diana Johnson]

It is very worrying to hear that there has not been any progress on what is happening in Northern Ireland, so the Minister needs to explain to the House what work is going on.

[Andy Slaughter (Hammersmith) (Lab)]

I congratulate my hon. Friend on being one of the leaders of this campaign. It is clear that the Scottish scheme is more generous than the one in England. Does she agree that at the very least the Government should ensure parity, and in particular that nobody should be worse off under the new scheme than they were under the old scheme?

[Diana Johnson]

My hon. Friend makes that point very well. Later I will compare and contrast the Scottish scheme, which is more generous.

[Chris Stephens (Glasgow South West) (SNP)]

The difference between the two schemes is important because hon. Members representing constituencies across the UK may have one constituent getting compensation under the English scheme and another getting compensation under the Scottish scheme, involving, as is currently the case, different amounts of money and different levels of compensation.

[Diana Johnson]

Yes; the hon. Gentleman makes a very important point. One of the unintended consequences of devolution is that we are ending up with such a mishmash of schemes, and that is of concern for the people affected.

[Nadhim Zahawi (Stratford-on-Avon) (Con)]

One of my constituents, Mr M, makes exactly that point: it is unfair that the Scottish settlement is so different from the settlement for him in Stratford-on-Avon. Most importantly, one of my constituents, who is in the Public Gallery, wants to remind the House that there are fewer than 300 primary beneficiaries left, and it is vital that they are not forgotten.

[Diana Johnson]

Absolutely. That is a very important point. I will come on to the primary beneficiaries in a while, but I will now make some progress.

My first concern was about the different schemes that are available. The second issue, which is also important, is that we know the five existing trusts will be amalgamated into a single body to administer the scheme at some point in 2017. I am deeply troubled by the fact that the administration of the new body looks likely to be done by a profit-making private company. I know that Atos and Capita have attended meetings with Department of Health officials about the new contract. Formal tender submissions will be due soon, with a decision on the contractor set to be made in 2017. No Health Minister has had the courtesy to tell the all-party group of these plans, nor were the beneficiaries asked for their views about this in the survey done in January. Even the Department’s response to the survey, which was published in July, made absolutely no mention of such a prospect. Alongside hon. Members on both sides of the House, I cannot support proposals to contract out provision to Atos or Capita.

Let me remind the House how many in this community were infected in the first place. Many contracted HIV and hepatitis C from American blood products supplied by profit-making private companies. The United States, unlike the UK, has always allowed the commercial purchase of blood products, and those products were often donated by people who desperately needed money and were willing to be less than honest about their chances of infection. This is the reason why so many in the affected community harbour such distrust of private companies.

[Ian Austin (Dudley North) (Lab)]

I want to place on the record that I have been contacted by constituents in Dudley who have told me how grateful they are to my hon. Friend for the lead she has given and for the campaigning she has done on this issue. One constituent has written to me about allegations of impropriety in relation to doctors being encouraged by pharmaceutical companies to use plasma concentrates instead of cryoprecipitate in blood transfusions. Does she agree with my constituents that that should be investigated?

[Diana Johnson]

I am very happy to agree with my hon. Friend. That should certainly be investigated.

I return to people’s concerns about the use of private companies. We know that, over the past six years, there has been a huge sense of mistrust of the disability assessment regime operated by Atos before it walked away from its contract with the Department for Work and Pensions. If there is one thing that could fatally undermine progress towards a better support scheme, it is the plan that the new scheme be administered by a private company. I strongly urge the Government to look again at that plan and show empathy for the people affected.

[Catherine West (Hornsey and Wood Green) (Lab)]

I congratulate my hon. Friend on her dogged and tireless work on this issue. Does she agree that there is a big issue of trust here, in relation not just to the potential new providers but to what happened previously? Some survivors and families who survive victims who have passed away believe that senior health professionals knew about the contamination but decided to continue with their interventions for cost reasons.

[Diana Johnson]

Yes. One point I will come to later is the need for some form of inquiry.

To continue my point about why who runs the scheme is so important, a big criticism of the new scheme is the continuation of discretionary payments. Department of Health officials are still not listening to the concerns raised about that. The APPG inquiry uncovered huge issues with the highly conditional and poorly managed discretionary support scheme. One respondent told us:

“The whole system seems designed to make you feel like a beggar”.

I also believe that the trust’s current administrators have not fought hard enough for their beneficiaries, which legally they could have done. Instead, they saw their role as dispassionate managers and conduits to the Department of Health. They left the affected community alone to fight for themselves. If the new support scheme ends up being managed by Atos or Capita it will do nothing to address those fundamental issues, and could even make the situation much worse, adding insult to injury. I call on the Minister to do the right thing and announce that she will scrap plans for a private profit-making scheme administrator, and will replace the current scheme with a more beneficiary run and focused organisation that has no profit motive.

Will the Minister set out exactly what kind of discretionary support the new scheme will provide? It remains unclear whether any or all of the current support will continue. That contrasts starkly with the Scottish scheme, where the financial review group agreed that no one should receive less financial support under the new scheme. Will the Government urgently provide the same guarantee and publish full details of any obligations that the new scheme administrators will be subject to?

There are also issues with the current welfare benefits reassessment regime that many people are having to go through—for example, moving from disability living allowance on to the personal independence payment. Those issues need to be addressed urgently, so that individuals can be passported straightaway on to new benefits. I hope the Minister will agree that that is a sensible way forward for the people affected.

My third concern relates to the families of those affected, who need better support under the scheme. Under the new English proposals, widows and widowers will continue to be eligible for discretionary support—whatever that means; I have raised my concerns about that already—on top of a new £10,000 lump sum, provided their loved ones died at least partially as a result of contracting HIV or hepatitis C. However, many clinicians have already told me that that could mean many people are excluded from assistance simply because their partner’s death certificate does not include mention of HIV or hepatitis C, sometimes at the family’s request. The new proposals could also still be considerably less generous than the support that some widows already receive, because there is a huge question mark hanging over what discretionary help they will get under the reformed scheme.

[Tim Farron (Westmorland and Lonsdale) (LD)]

I am grateful to the hon. Lady for leading this debate. Many people around the country are hugely grateful to her, me included. Two of my constituents—Mike Dorricott and Neil Howson—sadly passed away as a consequence of contaminated blood and the diseases that they contracted. Their loved ones have exactly the concern that the hon. Lady indicated: that the dependence on potential discretionary payments is insufficient. The fact that the one-off payment is not backed up by the generosity, regularity and dependability of an annual payment means that such people often have to give up work, lose the ability to have a pension of their own and find themselves in immense hardship.

[Diana Johnson]

That leads me to my next point, which is on the Scottish proposals. As we have heard, they offer a better settlement, particularly for the bereaved, who are guaranteed 75% of their partner’s previous entitlement in addition to continued access to the Scottish discretionary scheme. That gives them much-needed security in a way that the proposed English scheme does not. I ask the Minister to look again at adopting the Scottish model and at providing more guarantees on non-discretionary support for widows and widowers.

My fourth point is about support for primary beneficiaries, which was raised in an intervention. The APPG asks the Government to look again at some groups of primary beneficiaries who need better support than is proposed under the English scheme. I received an email this morning from someone who contracted hepatitis B through contaminated blood products. Under the scheme, they are not eligible for any help, but they have obviously suffered and are suffering still. I hope that the Minister is willing to look at a very small group of people who are not covered.

The APPG believes that if more assistance were provided in the form of non-discretionary, ongoing payments, it would reduce the need for discretionary support and allay a great deal of our constituents’ worries. I urge the Department of Health to consider the contrast with the support announced in the Scottish scheme and whether more non-discretionary, ongoing payments could be made.

[Rebecca Pow (Taunton Deane) (Con)]

I applaud the hon. Lady for bringing the debate to the House. Although I recognise that the new payments scheme is an improvement, I want to speak up for one of my constituents, who does not want to be named. He is among the 256 out of the 1,250 haemophiliacs who were infected with multiple viruses—those who were co-infected. Their lives have been devastated—absolutely blighted—and they feel that they are not being fairly treated under the new arrangement. Will she expand on whether we can help those people a little bit more?

[Diana Johnson]

I will come on to the ways in which I think the funding that the Government have put together could be used more effectively to assist more people who have been affected by receiving contaminated blood, including the hon. Lady’s constituent.

I will talk a little about the overall funding of the new scheme. There is much that the Government could do to improve the scheme without any additional cost to the public purse. Even if the Scottish proposals, particularly those for widows and primary beneficiaries, were adopted in England, they would fall within the budget that has been allocated for every year save 2016-17. That is set out in an analysis conducted by the Haemophilia Society, which was presented to the Department of Health at last week’s meeting. I hope officials will consider that carefully.

Any need for additional funding could easily be met from two identifiable sources. I think the £230 million from the sale of our 80% stake in Plasma Resources UK should be made available, as should any reserves left in the accounts of the three discretionary charities when they are closed in 2017. Further, I ask the Minister to promise that any money that is not spent on beneficiaries in each year will be rolled over to support beneficiaries in the next year. At last week’s meeting at the Department of Health, it appeared from what officials told us that any unspent money would have to be given back to the Treasury. That would be a gross act of betrayal towards those affected.

In conclusion, unless the Department of Health accepts that its new scheme still has substantial issues that need to be addressed, the new support scheme will not command the full confidence of the people it needs to satisfy. Indeed, in some crucial respects it will be worse than the system it replaces.

The APPG still believes that people should have the option of a lump sum payment as part of any new scheme, to give them the opportunity to decide for themselves what is best for them—either a regular payment or a one-off lump sum payment.

[Andy Slaughter]

My hon. Friend is making an excellent speech. Why cannot lump sum payments be an alternative to regular payments? Why must the Government be grudging on these matters? This and previous Governments owe these people a huge debt of obligation. This should be a properly funded scheme and we should have a proper investigation to get to the truth of this terrible scandal, which is a stain on our country.

[Diana Johnson]

My hon. Friend puts the point very well. The APPG and the right hon. Member for North East Bedfordshire (Alistair Burt) have spoken to people about what they want from the revised scheme, and they have said they want the option of a lump sum payment, if that would be better for them than regular payments. It is important that we give people the ability to make those decisions for themselves.

As my hon. Friend the Member for Hammersmith (Andy Slaughter) just alluded to, the APPG still believes that we need a Hillsborough-style panel inquiry to allow people to tell their stories and to say what happened to them and how it affected them.

[Mr George Howarth (Knowsley) (Lab)]

Will my hon. Friend give way?

[Diana Johnson]

I am happy to give way to my right hon. Friend, who has great knowledge on this point.

[Mr Howarth]

I am grateful to my hon. Friend, who is making a very powerful case, as she always does, and I congratulate her on the way she is doing it. She is right about the potential of a Hillsborough-style inquiry—I note that the Prime Minister is a great fan of that process, and has said so previously—but we need to take care that such an inquiry does not put all the important and urgent issues she has raised into the shade while the process takes place. The two things need to be separate.

[Diana Johnson]

I agree with my right hon. Friend, who makes his point very well. We need to make sure that any new support scheme moves quickly. We need to get on with this. The previous Prime Minister, when he apologised on behalf of the nation 18 months ago, also allocated £25 million, but none of that has been spent yet, as I understand it. We need to make sure that a scheme is introduced as quickly as possible, although obviously with our concerns having being addressed. But absolutely the two things can run in parallel, and a Hillsborough-style panel inquiry would give people the opportunity of a truth and reconciliation inquiry. I still think it a key requirement if there is to be any real sense of justice and closure.

[Catherine West]

Families who have suffered a loss following this terrible scandal have expressed a desire to get hold of certain documents and to find out what happened and who knew what. They really just want a sense of justice.

[Diana Johnson]

I will now conclude. I know that in later speeches hon. Members will want to raise the deeply moving stories of their constituents. It is those stories that have led me to campaign on this issue over many years, and I am always mindful of the struggles faced by my constituent Glen Wilkinson. Glen was diagnosed with hepatitis C after a routine tooth operation in the 1980s, when he was just 19. He has had to live with the virus all his life and is still waiting for proper recognition of how it has affected him. I hope that the Minister and the Government will now work to ensure that Glen and others can live the rest of their lives in dignity.

[Several hon. Members rose—]

--- Later in debate ---

[The Parliamentary Under-Secretary of State for Health (Nicola Blackwood)]

I congratulate the hon. Member for Kingston upon Hull North (Diana Johnson) and all the members of the all-party parliamentary group on haemophilia and contaminated blood on helping to secure this debate, and I thank the Backbench Business Committee for providing time for it. It has been a highly informed, very personal and moving debate, but it has also been non-partisan. I thank all Members from across the House for the constructive way in which they have approached the debate.

I would like to begin by formally adding my personal apology to all those who have been affected by these tragic circumstances and the impact that this has had on so many families. I thank all colleagues’ constituents for their bravery in allowing their personal circumstances to be shared in the House today. It brings this debate to exactly where it should be, reminding us all what we are trying to achieve through the process. The importance of that cannot be overstated. I wish I could refer to all the constituents who were mentioned today. I listed them, but that would take most of the debating time that we have today, so I say thank you to all those who allowed their stories to be told. That is exactly why the Government are introducing the reforms we have been debating today to existing support schemes, alongside a commitment within this spending review period of up to £125 million until 2020-21 for those affected, which will more than double the annual spend over the next five years.

At the beginning, however, we should be up front in recognising that nothing can make up for the suffering and loss these families have experienced, and no financial support can change what has happened to them. However, I hope all of those here today will recognise that the support provided is significantly more than any previous Administration have provided, and recognise how seriously the Government take this issue. I would like to join colleagues in paying tribute to the previous Prime Minister and to my predecessor, my hon. Friend the Member for Battersea (Jane Ellison), for all their work on the issue. I reiterate their statement that the aim of this support scheme is that no one will be worse off.

It is, as many colleagues have said, time for our reforms to bring an end to the tortured road that far too many of those affected have been down. It is time for a more comprehensive and accessible scheme that gives those affected their dignity back. However, as I hope is clear from the debate, not all the details are yet resolved. I hope to answer as many questions as I can today, but I am certain that the noble Lord Prior will be listening closely to the debate, and he will be in contact with all those here today to make sure we can resolve details that I cannot get to in the time available.

Let me turn to where we are. The reforms guarantee that all those who are chronically affected will, for the first time, receive a regular annual payment in recognition of what has happened to them. That includes all the 2,400 individuals with hepatitis C stage 1, who previously received no ongoing payment, but who will now expect to receive £3,500 a year.

Increases to existing annual payments have also been announced. These are not designed in themselves to guarantee a reasonable standard of living. The package needs to be considered in the context of the whole range of support that is available for the patient group, including support being exempt for the purposes of tax, and benefits being claimed by beneficiaries of the schemes, as the hon. Member for Glasgow South West (Chris Stephens) rightly mentioned.

I would like to address a couple of the issues raised by the hon. Member for Kingston upon Hull North about finances. We do expect to spend all the budget allocated to the scheme in the year, but the budget for the scheme does come within the Department of Health’s budget, not the Treasury budget, so if there is an underspend in any one year, the money will remain in the Department of Health. If any payments that should be made within that year fall into the next year, we can take that money forward.

I would also like to address the concerns that have been raised about the tendering for the scheme. The shadow Minister is, I am afraid, not quite correct that Capita and Atos have already bid to administer the scheme. The invitation to tender has not yet been issued, so no initial bids have been received so far. We intend to issue the invitation to tender shortly, and I am absolutely sure that, as the tender is being designed, the concerns that have been raised in the debate will be heard, and that the concerns about trust and the history of this situation will be well understood by all those involved in the design.

[Diana Johnson]

I am grateful to the Minister for clarifying the position around the tender, but could she confirm that the only organisations or businesses that have been invited in for conversations with the Department of Health were the two that have been mentioned by a number of hon. Members today? Is that correct or not?

[Nicola Blackwood]

I have had no meetings on this issue, because it is obviously not within my departmental brief. I am happy to try to find out about that issue, if the hon. Lady would like.

--- Later in debate ---

[Diana Johnson]

I will try to be brief. I thank, and am grateful to, hon. Members from across the Chamber for their excellent contributions. I spoke for quite a long time at the beginning, but I missed out some very important points, including the fact that the new scheme will be in place only until the end of the spending review in 2021, and that is of concern to many people. I was also remiss not to welcome my hon. Friend the Member for Washington and Sunderland West (Mrs Hodgson) to her new role. She is a good friend and this is the first time that I have been in a debate with her as the shadow Minister for public health.

I know that the issue under discussion is not part of the Minister’s policy area, but I was pleased that she offered some reassurance on particular areas, including that any budget underspend by the trusts and charities in the new scheme will stay in the Department of Health budget and not go to the Treasury. I hope that it will be used to help beneficiaries. Her comments about death certificates were also welcome.

I am still very worried, however, about the tendering process that the Government seem to be set on pursuing to decide the scheme’s new administrator. It would be absolutely wrong if the they chose a private sector provider to do that.

I welcome the stage 1 hepatitis C payments.

[Sir Peter Bottomley]

Does the hon. Lady agree that, whoever administers the scheme, if there are anomalies or cases that come outside the rules, they should be free to tell the Government that they should change them?

[Mr Deputy Speaker (Mr Lindsay Hoyle)]

May I interrupt? The winding-up speech is meant to be very brief. I do not mind, but there is a big debate to follow with a lot of speakers, and we are eating into that time.

[Diana Johnson]

I will be very quick. The ongoing payment of £3,500 for people with stage 1 hepatitis C is not a large amount of money for those affected. Under the Scottish model, a £30,000 lump sum payment is made if people have already received the £20,000 lump sum payment. Over the spending period, therefore, I am not sure that the Government can really say that the help that they are providing to people affected with stage 1 hepatitis C is greater than that provided to those in Scotland.

Question put and agreed to.

Resolved,

That this House notes the Government’s recent announcement on the reform of the support schemes for people affected by contaminated blood and blood products; recognises that the contaminated blood scandal was one of the biggest treatment disasters in the history of the NHS; believes that those people affected should have a reasonable standard of living and not just be removed from poverty; is concerned that bereaved partners of people who died with HIV/AIDS and those reliant on regular top-up payments will be worse off; is concerned that the new payments for people infected with Hepatitis C are not commensurate with the pain and suffering caused; notes that people who were infected with other viruses, those who did not reach the chronic stage of Hepatitis C and bereaved parents are not mentioned in this announcement; and calls on the Government to use the funds from the sale of Plasma Resources UK to bring forward revised proposals that are properly funded and which provide appropriate support to all affected people.