Hull North MP Diana Johnson gave the speech below opening the House of Commons BackBench Debate on the support arrangements for victims of the NHS Contaminated Blood scandal. The speech can also be viewed at http://goo.gl/VwWbY6.
Diana Johnson (Kingston upon Hull North) (Lab)
I beg to move,
That this House recognises that the contaminated blood scandal was one of the biggest treatment disasters in the history of
the NHS, which devastated thousands of lives; notes that for those affected this tragedy continues to have a profound effect on their lives which has rarely been properly recognised; welcomes the Government’s decision to conduct a consultation to reform support arrangements and to commit extra resources to support those affected; further notes, however, that the current Government proposals will leave some people worse off and continue the situation where some of those affected receive no ongoing support; and calls on the Government to take note of all the responses to the consultation and to heed the recommendations of the All Party Parliamentary Group on Haemophilia and Contaminated Blood’s Inquiry into the current support arrangements so as to ensure that no-one is worse off, left destitute or applying for individual payments as a result of the proposed changes and that everyone affected by the tragedy, including widows and dependents, receives support commensurate with the decades of suffering and loss of amenity they have experienced.
I thank the Backbench Business Committee for granting time for this debate today. This same topic was the subject of the first debate that the Committee scheduled after its establishment in 2010; it is sad that, six years on, we are still fighting for justice for those affected by the contaminated blood scandal.
Also in 2010, during the general election campaign, my constituent Glenn Wilkinson came to see me with his wife Alison. They told me about Glenn’s having been given infected blood during dental treatment at Hull Royal Infirmary and how it had affected his life, his health and his opportunities for work and how it had impacted on his family. From then on, I began to find out about the biggest treatment disaster in the history of the NHS.
Henry Smith (Crawley) (Con)
Last year, my constituent Eddie Quigley came to see me in my office. Sadly, he has since passed away. On behalf of his son James and his widow Sally, I sincerely thank the hon. Lady for her persistence in bringing forward this debate and in ensuring that the issue is properly discussed.
I am grateful to the hon. Gentleman for those comments. I have received many emails and letters from affected families from all over the country. Sadly, I cannot refer to them all today.
I want to set the scene and comment on the Government’s proposals, and I will try to be brief to allow time for the many other hon. Members who want to contribute and talk about their constituents’ views on the consultation.
Governments of both colours have introduced a patchwork of schemes and assistance over the years, but there has never been a complete package of support for those affected. That is in marked contrast to the response to other medical and treatment disasters, such as thalidomide, where full support and compensation has been put in place. I am sure that the whole House wants to pay tribute to all those who have fought for justice over many years and to the families and loved ones who supported them.
Mark Tami (Alyn and Deeside) (Lab)
My hon. Friend mentioned the various schemes that have been put in place, but does she agree that the process of applying and getting through those is very difficult, particularly for people who are so ill?
Absolutely. My hon. Friend makes a very important point and I shall come to it shortly.
Several hon. Members rose—
I will make a little progress and then take an intervention. I was paying tribute to all those who fought for many years. I think we would all agree that they have been fighting for too many years to get a just settlement for what happened to them.
Let us be frank: they are weary from fighting. They want to resolve this once and for all, and to get on with their lives.
Sadly, more and more people are dying without seeing that justice. Each individual affected has been robbed of many of the opportunities we all take for granted—the opportunities to work, to have a career, to buy a home and to grow old with the person they love. Family members have had to care for their loved ones, perhaps giving up careers to do so, and watch their health deteriorate.
Mr Jim Cunningham (Coventry South) (Lab)
My hon. Friend has been tenacious in her pursuit of this issue, which has been going on for many years. Like her, I have constituents who have been affected by it, and it is about time this was brought to an end and action was actually taken. She mentioned thalidomide, but that took many years to address and it took a determined Minister to introduce the scheme. If he did that, I cannot see why this Minister cannot do the same.
I am grateful for my hon. Friend’s comments. It is important to recognise that in this case there has never been an admission of liability from the Department of Health or the NHS in respect of what happened to these individuals; they have always taken the view that nobody could have known at the time about the problem with the infected blood. I want to make the point that this is not a court of law; this is Parliament, and we are being asked to deal with a clear wrong that has been done to our constituents. We know that these people were damaged and harmed by the treatment they received from the NHS—by the state. What we need to do now is put together a proper support package to ensure that those affected and their families are at the heart of what we do and whatever scheme is proposed.
Mr Jonathan Djanogly (Huntingdon) (Con)
I apologise for having to leave very shortly, but I commend the hon. Lady on her sterling work on this cause. In the case of my constituent Mr Tony Farrugia and his brothers, who are campaigning here today, the situation is exactly as she describes; it is about the complexity of all the schemes.
Because his father died in 1986, before the trust was set up, his mother never received any money at all, and that remains the case today under what is being proposed. That seems very unfair to me.
I absolutely agree—
Caroline Lucas (Brighton, Pavilion) (Green)
And I will give way to the hon. Lady.
I am grateful to the hon. Lady for giving way, particularly as she has made such great inroads on this subject; I commend her for that. Does she agree that it is completely unacceptable, particularly in the context she has set out, that any reform the Government introduce should make sick people even worse off? That seems to be the height of injustice. One of my constituents will lose £500 a month, and another, Graham Manning, is in the Gallery today. They need to see that justice is being done. That has to be a bottom line.
I agree entirely. Let me return to the point I was making about liability and the need now to put in place a proper support package, recognising the wrong that has been done. For far too long, the Department of Health has not done that. It appears to me that it has been far more interested in protecting the institutional reputation of the Department and of the NHS than in looking to right a wrong.
In the last Parliament, a concerted effort, from all parties, was made to seek a lasting settlement for all our constituents.
The all-party group on haemophilia and contaminated blood led the way in producing a report showing that the current financial arrangements were not fit for purpose, were ad hoc and were overly bureaucratic. The right hon. Member for North East Bedfordshire (Alistair Burt) worked alongside the all-party group, with the Prime Minister’s office, to finally get an apology made in Parliament and an agreement that the Government would consult on a proper support package for all those affected. The Prime Minister’s apology a year ago and the announcement that £25 million would be made available for transitional support was very welcome. So, too, was the promise that there would be a full consultation on a comprehensive support package. I must say to the Minister that not one penny of that badly needed £25 million has been spent yet, and that the consultation on the new support scheme was announced only on 21 January this year—some nine months after the Prime Minister’s statement.
Kevin Brennan (Cardiff West) (Lab)
Like many Members, I have a constituent here today. Sue Sparks has been visiting the Palace and is now in the Public Gallery.
Is it not the case that the consultation does not seem to chime with the apology? What is on offer in no way seems to reflect what I am sure the Prime Minister meant as a sincere apology.
My hon. Friend makes an important point. We are now a few days away from the end of the consultation period. I understand that the Minister was advised—wrongly, I think—by her officials that she could not meet with the all-party group during the consultation period. I know that that was not the case in Scotland: the Minister there met MSPs and individuals. We called for this debate so that the Minister could listen to the comments of her fellow parliamentarians about the Government’s proposals and then feed them into the consultation.
Rebecca Pow (Taunton Deane) (Con)
I have many constituents in Taunton Deane whose lives are blighted by this issue of contaminated blood. Although I applaud the Government for bringing forward this consultation, there are many who believe that it is only adding fuel to the fire. In fact, it could be making the situation worse and causing more pain, not least because, in Scotland, people may get a better deal than those in England. I urge the Minister to look very carefully at the consultation so as not to penalise people who are already badly suffering.
I wish to move on now to highlight a few of the problems with the consultation. First, as has already been said, many of the existing recipients will receive lower payments under the new scheme. The Government’s proposals would end all discretionary support, such as winter fuel allowance, child supplements and low income top-ups, which means that many people will lose out, potentially by thousands of pounds a year.
Secondly, most of the current beneficiaries have hepatitis C stage 1 and currently get no ongoing support. They are left begging for individual payments from the Caxton Fund. The Government proposals will provide annual payments for people in stage 1, which is welcome, but those people will be subject to regular individual assessments. That could result in fluctuating payments and reduced financial certainty for individuals. Assessments will also take only clinical factors into account. They will not look at the loss of education or employment, and decades of loss of amenity, ill health and loss of earnings. According to the information from the Government, those assessments will cost £500,000 a year to carry out. Would that money not be better spent on providing financial support to those people?
Caroline Nokes (Romsey and Southampton North) (Con)
I congratulate the hon. Lady on her determination and her decision to champion this issue. She highlighted the decades of ill health from which many suffer. There is also the emotional stress and trauma. Does she agree that the consultation process itself has added to that burden for some of those people? That is certainly the message that I have received loud and clear from my constituent, Mike Webster, who came to see me on this issue.
The hon. Lady makes a valid point. I will proceed with my concerns with the consultation, because I would like other Members to speak in the debate.
My third point is about the inadequate provision for the “affected” community—the widows, the partners and the dependants of those infected. The proposals for widows appear to be extremely complex. They create six categories of widows, with big variations in what is offered within each category.
Department of Health officials could not explain how they would work when they met the APPG’s secretariat and have not provided an explanation of these proposals as promised. There also appears to be nothing here for dependent children.
Mr David Hanson (Delyn) (Lab)
I have constituents who have been infected. I have also heard from infected partners who, because of the failure of the scheme, cannot get insurance for themselves. Those who have young children are worried about the long-term implications.
Does my hon. Friend not think that the proposal adds extra stress to what is already a very stressful situation?
My right hon. Friend makes an important point.
Fourthly, there are concerns that under the plans money will be used to pay for new drugs to treat hepatitis C, which will be bought separately from the NHS budget, so will cost more. Under guidelines from the National Institute for Health and Care Excellence, everyone with hepatitis C should be eligible for treatment with a new generation of drugs from the end of February 2016, so when funds are allocated for treatment, that means once again that money does not go directly to those who need financial support.
Barbara Keeley (Worsley and Eccles South) (Lab)
Does my hon. Friend, who is making an excellent speech, agree with my constituent, who is affected and feels that the changes are deliberately punitive and exceedingly cruel, as they use requests for changes to support schemes to affect people in that way? My constituent has had to use the ex gratia payment from the Government to fund treatment refused by the NHS, as many other people have had to do. His annual payment will decrease over time and he will lose the additional support that is currently provided. People such as my constituent are hit again and again, so how can the consultation on reform go ahead on that basis?
I shall move on and complete my speech.
Fifthly, there is concern about the fact that beneficiaries in England will be worse off than beneficiaries in Scotland. The Scottish proposals are far more generous to hepatitis C stage 2 and HIV sufferers, who will receive £27,000 per annum or £37,000 if they are co-infected, which is welcome, but are much less generous for hepatitis C stage 1s, who will receive an additional lump sum payment but no ongoing support. The Scottish proposals have been broadly welcomed, partly because of the way in which the consultation was conducted in Scotland, and the clear acknowledgement, for example, that the existing trust structure will be scrapped.
Several hon. Members rose—
I am conscious of time, and I am about to reach my allocated 15 minutes, so if hon. Members do not mind I will complete my speech.
Following the scrapping of the trust structure in the Scottish model, may I seek reassurance from the Minister that she will scrap trust structures in England, Wales and Northern Ireland, which have been subject to much criticism? There is no mention in the consultation of any proposals on lump sum payments, which would enable those affected to make real choices about their own lives, such as paying off a mortgage, clearing debts or helping their children. I reiterate my belief that the £230 million the Government are set to receive over the next few years from the sale of Plasma Resources UK should be earmarked for lump sum payments for those people. This is money from the work by the Department of Health to create blood products, and it would be fitting to use it in that way.
I am disappointed that there is no mention in the Government proposals of allowing those who have been affected to be passported automatically through to the new benefits that have been introduced—for example, moving from the disability living allowance to the personal independence payment. There is no consideration at all of an Irish-style medical card to ensure that access to healthcare is as speedy as possible.
In conclusion, we have had a chance to consider the detail of the Government’s proposals. I am disappointed, as they do not deliver what we all want: giving people dignity and allowing them to get on with their lives, rather than constantly having to battle to get support. That means they have to campaign to ensure that their lives do not become even worse, let alone see improvements. They need and deserve action in a timely manner.
They do not want to end their lives as campaigners. Many of those who are infected have told me that they believe that the Government are just delaying a proper settlement as more and more people die. After their long and bitter experience who can blame them?
Jason McCartney (Colne Valley) (Con)
I am happy to give way briefly to the hon. Gentleman, who is the former co-chair of the all-party group.
That is the point I was going to make. I should like to thank the hon. Lady for co-chairing the APPG on haemophilia and contaminated blood with me, and with many others in the last Parliament. Does she agree that the Minister should accept that we have a framework with the settlement in Scotland, which needs tweaking, and the comprehensive APPG report, which looks at the fact that trusts and funds did not operate to support the victims? If we heed experiences in Scotland and our report, we can begin to help the victims.
I thank the hon. Gentleman, who speaks with wisdom on this matter.
It is now time for the biggest treatment disaster in the history of the NHS to be settled once and for all. I hope the Minister will look again at the proposals in her consultation and think about what is in the best interests of the group in question, who have been so badly treated for so many years.