Blood samples for HIV testing. Photo: Getty
Show Hide image

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.

Photo: Getty
Show Hide image

After Richmond Park, Labour MPs are haunted by a familiar ghost

Labour MPs in big cities fear the Liberal Democrats, while in the north, they fear Ukip. 

The Liberal Democrats’ victory in Richmond Park has Conservatives nervous, and rightly so. Not only did Sarah Olney take the votes of soft Conservatives who backed a Remain vote on 23 June, she also benefited from tactical voting from Labour voters.

Although Richmond Park is the fifth most pro-Remain constituency won by a Conservative at the 2015 election, the more significant number – for the Liberal Democrats at least – is 15: that’s the number of Tory-held seats they could win if they reduced the Labour vote by the same amount they managed in Richmond Park.

The Tories have two Brexit headaches, electorally speaking. The first is the direct loss of voters who backed David Cameron in 2015 and a Remain vote in 2016 to the Liberal Democrats. The second is that Brexit appears to have made Liberal Democrat candidates palatable to Labour voters who backed the party as the anti-Conservative option in seats where Labour is generally weak from 1992 to 2010, but stayed at home or voted Labour in 2015.

Although local council by-elections are not as dramatic as parliamentary ones, they offer clues as to how national elections may play out, and it’s worth noting that Richmond Park wasn’t the only place where the Liberal Democrats saw a dramatic surge in the party’s fortunes. They also made a dramatic gain in Chichester, which voted to leave.

(That’s the other factor to remember in the “Leave/Remain” divide. In Liberal-Conservative battlegrounds where the majority of voters opted to leave, the third-placed Labour and Green vote tends to be heavily pro-Remain.)

But it’s not just Conservatives with the Liberal Democrats in second who have cause to be nervous.  Labour MPs outside of England's big cities have long been nervous that Ukip will do to them what the SNP did to their Scottish colleagues in 2015. That Ukip is now in second place in many seats that Labour once considered safe only adds to the sense of unease.

In a lot of seats, the closeness of Ukip is overstated. As one MP, who has the Conservatives in second place observed, “All that’s happened is you used to have five or six no-hopers, and all of that vote has gone to Ukip, so colleagues are nervous”. That’s true, to an extent. But it’s worth noting that the same thing could be said for the Liberal Democrats in Conservative seats in 1992. All they had done was to coagulate most of the “anyone but the Conservative” vote under their banner. In 1997, they took Conservative votes – and with it, picked up 28 formerly Tory seats.

Also nervous are the party’s London MPs, albeit for different reasons. They fear that Remain voters will desert them for the Liberal Democrats. (It’s worth noting that Catherine West, who sits for the most pro-Remain seat in the country, has already told constituents that she will vote against Article 50, as has David Lammy, another North London MP.)

A particular cause for alarm is that most of the party’s high command – Jeremy Corbyn, Emily Thornberry, Diane Abbott, and Keir Starmer – all sit for seats that were heavily pro-Remain. Thornberry, in particular, has the particularly dangerous combination of a seat that voted Remain in June but has flirted with the Liberal Democrats in the past, with the shadow foreign secretary finishing just 484 votes ahead of Bridget Fox, the Liberal Democrat candidate, in 2005.

Are they right to be worried? That the referendum allowed the Liberal Democrats to reconfigure the politics of Richmond Park adds credence to a YouGov poll that showed a pro-Brexit Labour party finishing third behind a pro-second referendum Liberal Democrat party, should Labour go into the next election backing Brexit and the Liberal Democrats opt to oppose it.

The difficulty for Labour is the calculation for the Liberal Democrats is easy. They are an unabashedly pro-European party, from their activists to their MPs, and the 22 per cent of voters who back a referendum re-run are a significantly larger group than the eight per cent of the vote that Nick Clegg’s Liberal Democrats got in 2015.

The calculus is more fraught for Labour. In terms of the straight Conservative battle, their best hope is to put the referendum question to bed and focus on issues which don’t divide their coalition in two, as immigration does. But for separate reasons, neither Ukip nor the Liberal Democrats will be keen to let them.

At every point, the referendum question poses difficulties for Labour. Even when neither Ukip nor the Liberal Democrats take seats from them directly, they can hurt them badly, allowing the Conservatives to come through the middle.

The big problem is that the stance that makes sense in terms of maintaining party unity is to try to run on a ticket of moving past the referendum and focussing on the party’s core issues of social justice, better public services and redistribution.

But the trouble with that approach is that it’s alarmingly similar to the one favoured by Kezia Dugdale and Scottish Labour in 2016, who tried to make the election about public services, not the constitution. They came third, behind a Conservative party that ran on an explicitly pro-Union platform. The possibility of an English sequel should not be ruled out.  

Stephen Bush is special correspondent at the New Statesman. His daily briefing, Morning Call, provides a quick and essential guide to British politics.