Blood samples for HIV testing. Photo: Getty
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Those affected by the UK’s contaminated blood scandal deserve an apology from the prime minister

We can’t give them back their health. But we can give them back their dignity.

Today, the All-Party Parliamentary Group (APPG) on Haemophilia and Contaminated Blood, which I co-chair, will release the results of a four-month inquiry into the current support arrangements for those affected by the contaminated blood scandal in the UK.   

This report is on a confessedly opaque and little-known topic, and no doubt many readers will have never heard of the issue. But for those it affected, the contaminated blood scandal changed their lives forever, as well as the lives of their partners, carers and dependants. It refers to a period, from the 1970s through to the early-1990s, when thousands of people underwent treatment with NHS blood products now known to have been infected with HIV and/or Hepatitis C.

The scandal affected a great many individuals. Almost the entire community of people with haemophilia at the time, almost 5,000 people, became infected with one or both of these viruses, as they often required injections of blood factor concentrate to help heal wounds and stay alive. But a great many individuals without bleeding disorders were also infected through blood transfusions. This says nothing of those secondarily infected by their loved ones or of the countless carers, spouses and dependants who became embroiled in the tragedy – many having to sacrifice their careers investing considerable time in the care and support of those affected.

This scandal was not unique to Britain. But unlike in other countries, in the UK no public inquiry has ever been conducted, no prime minister has ever publicly apologised and what support there is has developed in a haphazard and piecemeal fashion, often in response to lobbying and litigation by campaigners.

Ever since the first support for HIV infectees gradually emerged in 1987-1993, what financial support government has given has been delivered at arm’s length, through external entities solely funded by the Department of Health (DH). Following extensions to support in 2003, 2009 and 2011, we are now left with a complex system: five different DH-funded organisations – two private companies; and three registered charities – each of which provide different kinds of assistance to different groups of beneficiaries.

For many of those affected, this just doesn’t cut it. Many have consistently approached the us saying they are still deeply dissatisfied with the lot they get. So in September, the APPG decided to initiate an inquiry. With the generous help of YouGov and the Haemophilia Society, we distributed a survey to all recipients of trust-based support asking them their views on the current support arrangements. Today, we publish the results of this four-month inquiry.

This is the most comprehensive appraisal of this support which has ever been attempted. Almost 1,000 people affected gave evidence to the inquiry. Our findings are too numerous to set out in detail, but if one unifying theme runs throughout the 100-page report, it is this: those affected feel that they have been deprived of their dignity. The whole system of support, as it currently fashioned, denies them the independence and autonomy they would have enjoyed had they never been infected. This is the crux of the problem.

Those affected are entitled to various kinds of support, but the process of accessing it is often fraught with difficulties. People are constantly asked for various proofs which – in the minds of one respondent to our survey – made the whole system feel like “the worst form of modern-day begging”.

In order to get anything from any kind of trust, you must prove, in the first instance, that you were infected with the relevant virus and provide evidence that you underwent treatment with NHS blood products during the relevant time period. A great deal of claimants for Hepatitis C support cannot get it, for the simple reason that the NHS has lost record of their having undergone treatment – a failing completely beyond their control.

Even if you cross this hurdle, you face another challenge: to access many discretionary and means-tested payments, you then have to satisfy the trusts that you are at a sufficient level of “need”. As well as providing proof of income, this often means providing a statement explaining how one would “benefit” from the assistance, and even sometimes accepting an inspection of their property by trust staff. “There is a recurrent sense”, one respondent observed, “that the organisations involved are there to police the support rather than deliver it.” Some of the people registered with the trusts are in a state of poverty and want things as basic as vouchers to pay for food or white goods. Some have been reduced to tears by the onerous, painstaking and disempowering process of applying for assistance, which often ends in a rejection.

But all this assumes one even knows what support is available. It is clear from our inquiry that the trusts and the Department of Health have palpably failed to communicate to those affected what assistance is available to them, and how to apply for it. Many Hepatitis C infectees are unidentified and have not yet come forward to access trust-based support, doubtless unaware of the actual cause of their infection. Even those who have accessed the trusts are often not told about what support is available to them: they are never given, in an easy-to-access format, any document setting out precisely what they can get, and how they can get it. They are, in the words of one respondent, “left in the dark”. Payments people in poverty are entitled to, for example, are not always claimed because nobody ever tells them they can be.

These are considerable issues indeed. But even if we deal with this issue and, amongst other things, make sure that the help people can get is properly-communicated to them – as we have recommended in our Report – this still leaves one fundamental issue. The whole package of support people are entitled to is just not sufficient to meet their needs.

Successive governments have only ever expanded support in a haphazard and reactive way, and there has never been a holistic, independent and objective assessment of what support is necessary to meet their needs. Most of those with Hepatitis C, for example – those in “stage 1”, or chronic, Hepatitis C – do not get any ongoing payments whatsoever on the dubious grounds that they are not in a state of ongoing need. Neither are the widows/widowers of Hepatitis C infectees – even though the widows of HIV infectees are, despite both surely having sacrificed similar amounts to support their partners.

This system, in sum, desperately needs overhauling. Among other things, widows and those with stage 1 Hepatitis C deserve the dignity of an ongoing payments system that meets their needs; all beneficiaries deserve the dignity of an independent assessment of their needs which accounts for the additional costs of living with HIV and Hepatitis C; and those currently jumping through hoops to access payments deserve a better, more dignified way of applying for support. And most of all, they deserve the dignity of a public apology from the prime minister. Our feelings are summed up best by a Hepatitis C infectee quoted at the head of our inquiry 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.

Our report does not set out all that is necessary to set things right. But our hope, after all that has been done to those affected, is that in conjunction with other moves taking place, we will soon arrive at a settlement which finally enables them to live the rest of their lives in dignity.

Diana Johnson MP is co-chair of the All-Party Parliamentary Group (APPG) on Haemophilia and Contaminated Blood, which has just published a report into the current support for individuals affected by the contaminated blood scandal. There will be a Backbench Business Debate on the issue on Thursday 15 January. The report is available to download from the Haemophilia Society website.

Diana Johnson is the Labour MP for Hull North.

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The UK press’s timid reaction to Brexit is in marked contrast to the satire unleashed on Trump

For the BBC, it seems, to question leaving the EU is to be unpatriotic.

Faced with arguably their biggest political-cum-constitutional ­crisis in half a century, the press on either side of the pond has reacted very differently. Confronting a president who, unlike many predecessors, does not merely covertly dislike the press but rages against its supposed mendacity as a purveyor of “fake news”, the fourth estate in the US has had a pretty successful first 150-odd days of the Trump era. The Washington Post has recovered its Watergate mojo – the bloodhound tenacity that brought down Richard Nixon. The Post’s investigations into links between the Kremlin and Donald Trump’s associates and appointees have yielded the scalp of the former security adviser Michael Flynn and led to Attorney General Jeff Sessions recusing himself from all inquiries into Trump-Russia contacts. Few imagine the story will end there.

Meanwhile, the New York Times has cast off its image as “the grey lady” and come out in sharper colours. Commenting on the James Comey memo in an editorial, the Times raised the possibility that Trump was trying to “obstruct justice”, and called on Washington lawmakers to “uphold the constitution”. Trump’s denunciations of the Times as “failing” have acted as commercial “rocket fuel” for the paper, according to its CEO, Mark Thompson: it gained an “astonishing” 308,000 net digital news subscriptions in the first quarter of 2017.

US-based broadcast organisations such as CNN and ABC, once considered slick or bland, have reacted to Trump’s bullying in forthright style. Political satire is thriving, led by Saturday Night Live, with its devastating impersonations of the president by Alec Baldwin and of his press secretary Sean Spicer by the brilliant Melissa McCarthy.

British press reaction to Brexit – an epic constitutional, political and economic mess-up that probably includes a mind-bogglingly destructive self-ejection from a single market and customs union that took decades to construct, a move pushed through by a far-right faction of the Tory party – has been much more muted. The situation is complicated by the cheerleading for Brexit by most of the British tabloids and the Daily Telegraph. There are stirrings of resistance, but even after an election in which Theresa May spectacularly failed to secure a mandate for her hard Brexit, there is a sense, though the criticism of her has been intense, of the media pussy-footing around a government in disarray – not properly interrogating those who still seem to promise that, in relation to Europe, we can have our cake and eat it.

This is especially the case with the BBC, a state broadcaster that proudly proclaims its independence from the government of the day, protected by the famous “arm’s-length” principle. In the case of Brexit, the BBC invoked its concept of “balance” to give equal airtime and weight to Leavers and Remainers. Fair enough, you might say, but according to the economist Simon Wren-Lewis, it ignored a “near-unanimous view among economists that Brexit would hurt the UK economy in the longer term”.

A similar view of “balance” in the past led the BBC to equate views of ­non-scientific climate contrarians, often linked to the fossil-fuel lobby, with those of leading climate scientists. Many BBC Remainer insiders still feel incensed by what they regard as BBC betrayal over Brexit. Although the referendum of 23 June 2016 said nothing about leaving the single market or the customs union, the Today presenter Justin Webb, in a recent interview with Stuart Rose, put it like this: “Staying in the single market, staying in the customs union – [Leave voters would say] you might as well not be leaving. That fundamental position is a matter of democracy.” For the BBC, it seems, to question Brexit is somehow to be unpatriotic.

You might think that an independent, pro-democratic press would question the attempted use of the arcane and archaic “royal prerogative” to enable the ­bypassing of parliament when it came to triggering Article 50, signalling the UK’s departure from the EU. But when the campaigner Gina Miller’s challenge to the government was upheld by the high court, the three ruling judges were attacked on the front page of the Daily Mail as “enemies of the people”. Thomas Jefferson wrote that he would rather have “newspapers without a government” than “a government without newspapers”. It’s a fair guess he wasn’t thinking of newspapers that would brand the judiciary as “enemies of the people”.

It does seem significant that the United States has a written constitution, encapsulating the separation and balance of powers, and explicitly designed by the Founding Fathers to protect the young republic against tyranny. When James Madison drafted the First Amendment he was clear that freedom of the press should be guaranteed to a much higher degree in the republic than it had been in the colonising power, where for centuries, after all, British monarchs and prime ministers have had no qualms about censoring an unruly media.

By contrast, the United Kingdom remains a hybrid of monarchy and democracy, with no explicit protection of press freedom other than the one provided by the common law. The national impulse to bend the knee before the sovereign, to obey and not question authority, remains strangely powerful in Britain, the land of Henry VIII as well as of George Orwell. That the United Kingdom has slipped 11 places in the World Press Freedom Index in the past four years, down to 40th, has rightly occasioned outrage. Yet, even more awkwardly, the United States is three places lower still, at 43rd. Freedom of the press may not be doing quite as well as we imagine in either country.

Harry Eyres is the author of Horace and Me: Life Lessons from an Ancient Poet (2013)

This article first appeared in the 20 July 2017 issue of the New Statesman, The new world disorder