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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David Osland: “Corbyn is actually Labour’s only chance”

The veteran Labour activist on the release of his new pamphlet, How to Select or Reselect Your MP, which lays out the current Labour party rules for reselecting an MP.

Veteran left-wing Labour activist David Osland, a member of the national committee of the Labour Representation Committee and a former news editor of left magazine Tribune, has written a pamphlet intended for Labour members, explaining how the process of selecting Labour MPs works.

Published by Spokesman Books next week (advance copies are available at Nottingham’s Five Leaves bookshop), the short guide, entitled “How to Select or Reselect Your MP”, is entertaining and well-written, and its introduction, which goes into reasoning for selecting a new MP and some strategy, as well as its historical appendix, make it interesting reading even for those who are not members of the Labour party. Although I am a constituency Labour party secretary (writing here in an expressly personal capacity), I am still learning the Party’s complex rulebook; I passed this new guide to a local rules-boffin member, who is an avowed Owen Smith supporter, to evaluate whether its description of procedures is accurate. “It’s actually quite a useful pamphlet,” he said, although he had a few minor quibbles.

Osland, who calls himself a “strong, but not uncritical” Corbyn supporter, carefully admonishes readers not to embark on a campaign of mass deselections, but to get involved and active in their local branches, and to think carefully about Labour’s election fortunes; safe seats might be better candidates for a reselection campaign than Labour marginals. After a weak performance by Owen Smith in last night’s Glasgow debate and a call for Jeremy Corbyn to toughen up against opponents by ex Norwich MP Ian Gibson, an old ally, this pamphlet – named after a 1981 work by ex-Tribune editor Chris Mullin, who would later go on to be a junior minister under Blai – seems incredibly timely.

I spoke to Osland on the telephone yesterday.

Why did you decide to put this pamphlet together now?

I think it’s certainly an idea that’s circulating in the Labour left, after the experience with Corbyn as leader, and the reaction of the right. It’s a debate that people have hinted at; people like Rhea Wolfson have said that we need to be having a conversation about it, and I’d like to kickstart that conversation here.

For me personally it’s been a lifelong fascination – I was politically formed in the early Eighties, when mandatory reselection was Bennite orthodoxy and I’ve never personally altered my belief in that. I accept that the situation has changed, so what the Labour left is calling for at the moment, so I see this as a sensible contribution to the debate.

I wonder why selection and reselection are such an important focus? One could ask, isn’t it better to meet with sitting MPs and see if one can persuade them?

I’m not calling for the “deselect this person, deselect that person” rhetoric that you sometimes see on Twitter; you shouldn’t deselect an MP purely because they disagree with Corbyn, in a fair-minded way, but it’s fair to ask what are guys who are found to be be beating their wives or crossing picket lines doing sitting as our MPs? Where Labour MPs publicly have threatened to leave the party, as some have been doing, perhaps they don’t value their Labour involvement.

So to you it’s very much not a broad tool, but a tool to be used a specific way, such as when an MP has engaged in misconduct?

I think you do have to take it case by case. It would be silly to deselect the lot, as some people argue.

In terms of bringing the party to the left, or reforming party democracy, what role do you think reselection plays?

It’s a basic matter of accountability, isn’t it? People are standing as Labour candidates – they should have the confidence and backing of their constituency parties.

Do you think what it means to be a Labour member has changed since Corbyn?

Of course the Labour party has changed in the past year, as anyone who was around in the Blair, Brown, Miliband era will tell you. It’s a completely transformed party.

Will there be a strong reaction to the release of this pamphlet from Corbyn’s opponents?

Because the main aim is to set out the rules as they stand, I don’t see how there can be – if you want to use the rules, this is how to go about it. I explicitly spelled out that it’s a level playing field – if your Corbyn supporting MP doesn’t meet the expectations of the constituency party, then she or he is just as subject to a challenge.

What do you think of the new spate of suspensions and exclusions of some people who have just joined the party, and of other people, including Ronnie Draper, the General Secretary of the Bakers’ Union, who have been around for many years?

It’s clear that the Labour party machinery is playing hardball in this election, right from the start, with the freeze date and in the way they set up the registered supporters scheme, with the £25 buy in – they’re doing everything they can to influence this election unfairly. Whether they will succeed is an open question – they will if they can get away with it.

I’ve been seeing comments on social media from people who seem quite disheartened on the Corbyn side, who feel that there’s a chance that Smith might win through a war of attrition.

Looks like a Corbyn win to me, but the gerrymandering is so extensive that a Smith win isn’t ruled out.

You’ve been in the party for quite a few years, do you think there are echoes of past events, like the push for Bennite candidates and the takeover from Foot by Kinnock?

I was around last time – it was dirty and nasty at times. Despite the narrative being put out by the Labour right that it was all about Militant bully boys and intimidation by the left, my experience as a young Bennite in Tower Hamlets Labour Party, a very old traditional right wing Labour party, the intimidation was going the other way. It was an ugly time – physical threats, people shaping up to each other at meetings. It was nasty. Its nasty in a different way now, in a social media way. Can you compare the two? Some foul things happened in that time – perhaps worse in terms of physical intimidation – but you didn’t have the social media.

There are people who say the Labour Party is poised for a split – here in Plymouth (where we don’t have a Labour MP), I’m seeing comments from both sides that emphasise that after this leadership election we need to unite to fight the Tories. What do you think will happen?

I really hope a split can be avoided, but we’re a long way down the road towards a split. The sheer extent of the bad blood – the fact that the right have been openly talking about it – a number of newspaper articles about them lining up backing from wealthy donors, operating separately as a parliamentary group, then they pretend that butter wouldn’t melt in their mouths, and that they’re not talking about a split. Of course they are. Can we stop the kamikazes from doing what they’re plotting to do? I don’t know, I hope so.

How would we stop them?

We can’t, can we? If they have the financial backing, if they lose this leadership contest, there’s no doubt that some will try. I’m old enough to remember the launch of the SDP, let’s not rule it out happening again.

We’ve talked mostly about the membership. But is Corbynism a strategy to win elections?

With the new electoral registration rules already introduced, the coming boundary changes, and the loss of Scotland thanks to decades of New Labour neglect, it will be uphill struggle for Labour to win in 2020 or whenever the next election is, under any leadership.

I still think Corbyn is Labour’s best chance. Any form of continuity leadership from the past would see the Midlands and north fall to Ukip in the same way Scotland fell to the SNP. Corbyn is actually Labour’s only chance.

Margaret Corvid is a writer, activist and professional dominatrix living in the south west.