Contaminated Blood and Blood Products

Peter Bottomley Excerpts

Thursday 24th November 2016 Commons Chamber

[Sir Peter Bottomley (Worthing West) (Con)]

I pay tribute to my right hon. Friend the Member for North East Bedfordshire (Alistair Burt) and to the hon. Member for Kingston upon Hull North (Diana Johnson). Without them, we would not have come as far as we have. With them, we have come a long way, although there is still more to do. I do not want to repeat what they have said, but what I will say is that the House of Commons Library has produced a very useful debate pack which I recommend to Members. The reference is CDP-2016-0227. I also commend the Tainted Blood website, whose timeline and chronology remind us that the first known case of a haemophiliac being infected with hepatitis C was discovered in 1961. We know that the development of blood products was designed to help haemophiliacs, but it actually harmed them.

I know a bit about this subject indirectly. On the day of the State Opening of Parliament in 1975, my wife received eight pints of blood, and went on to join us in the House of Commons. That was before Factor VIII had been spread around. The first member of my family knowingly to take an AIDS or HIV test was my mother. She had had a pancreatic operation and received a lot of blood, and later, when she heard what was going on, she said that she was going to get herself tested.

When I was a Northern Ireland Minister in 1989-90, I got in touch with the then director of the Haemophilia Society, because a friend of mine had been infected with HIV and AIDS after his haemophilia had been treated. I spent a long time doing the best I properly could, in my role as a Minister in a different Department, to give advice on how to try to bring the issues into the open. I pay tribute to my constituents and friends who are living with hepatitis C, HIV or AIDS and who have given me an insight into their circumstances.

I want to make a couple of points which will be obvious to those who think about them. First, is it not possible for something to be written in the medical notes of all the people who have been infected to prevent every hospital, clinician or care giver they encounter from going through questions such as “What is your drinking habit?” , “Why have you got this liver problem?”, and X and Y and Z? It seems to me that one of the first things to which people should be entitled is an understanding that their circumstances do not require them to tell strangers, several times a year, what has caused them to be in need of care and help.

Secondly, while I welcome the advances in dealing with hepatitis C, some specialist treatment requires people who live some distance from London to come to specialist hospitals here, and to arrive reasonably early. Travel and accommodation costs—including those of the person who is accompanying them, to whom they are married or who is caring for them—will need to be met. We need to find some way of ensuring that when members of this group in particular require specialist treatment, they are not put to abnormal difficulties in finding accommodation or paying for their needs. I think we can be more sympathetic than that.

Some of these people are very young, or were very young when they were infected. They are not people of my age, approaching their retirement years—not that I am hoping to retire soon. They may have felt lonely because they did not feel they could have an active social life. Some probably had no particular interest in pursuing higher education given the degree to which they could work and, as well as physical health issues, they probably needed other therapy. People should go out of their way to put arms around them—act not just like a two-armed human being, but like an octopus and get right around them and try to meet all their needs in a way that they find acceptable.

I wish colleagues in the Department of Health well. These are not easy issues to tackle. I know perfectly well that the Treasury has a job to do in trying to oversee every little change in departmental spending, but I hope the Prime Minister will do what her predecessor did, and, after a few months of letting the debate settle down, meet my right hon. Friend the Member for North East Bedfordshire, the hon. Member for Kingston upon Hull North and representatives of the Haemophilia Society and ask, “Are we getting it right? Is there more that we should do?” The Prime Minister is able to bring together the Department of Health, the Department for Work and Pensions and the Treasury and ask, “What more can we properly do to get rid of most of the problems?”

I have a question for my hon. Friend the Minister that I hope she will be able to answer today or in writing. Are the Government still giving help to the Haemophilia Society? The load on that society has been increased by this work. Its briefings and involvement have been important to Government and those affected, and to those of us trying to represent both. I hope that if the society is being put to extra costs, the Government will see if they can provide the funds they used to provide—I think they provided £100,000 for five years.

--- Later in debate ---

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

It is a pleasure to take part in this debate and to follow my hon. Friend the Member for South Down (Ms Ritchie), who has consistently spoken with passion about this issue. I thank the hon. Member for Kingston upon Hull North (Diana Johnson) for securing the debate and for chairing the all-party group on haemophilia and contaminated blood.

I rise in this debate as a Scottish Member representing a Scottish constituency for two reasons. First, I want to speak on behalf of constituents such as Cathy Young, a stage 1 widow and member of the Scottish Infected Blood Forum. Like me, that group wants not only to express solidarity with those in other parts of the UK who find themselves in a different scheme, but to make the reasonable point that Scottish Members may find that they have constituents who are victims of infected blood and are covered by two different schemes, because the infection took place not in Scotland, but elsewhere in the UK. That is an important point. Members from other parts of the UK will find that they have constituents who are part of the Scottish scheme and benefit more as a result. Cathy wrote to me last night to say:

“I think for me personally, being a widow, obviously those still living with the horror of this disaster must be financially looked after, and not with payments that people feel that once again they’re just being fobbed off, but I would like both widows, and the deceased person’s estate, like children or parents of children who have passed away, to be recognised, and not with the insulting payment being offered. Our community deserve and demand the respect that has been denied us, and the justice that is long overdue. I send my total support to all those infected and affected by this disaster.”

Secondly, I want to raise issues relating to the proposed Scottish scheme that require this place to complete some work so that those infected in Scotland can receive their compensation. The Haemophilia Society points out that

“The Scottish scheme is comparatively more generous. The Scottish discretionary support scheme will also be better-administered, with patient involvement in governance; a goal to minimise means-testing and assessments; and a commitment to continue existing ongoing payments and ensure no beneficiary is worse off under the new support arrangements.”

According to analysis, the Department of Health could adopt many aspects of the Scottish scheme and still fall within the allocated budget. The all-party group calls on the Government to adopt those measures, particularly in relation to bereaved partners, and to reverse their plans for appointing a profit-making private administrator for the discretionary scheme. Any additional funds required to support those affected could be found, as the motion states, from the 2013 sale of the Government’s stake in Plasma Resources UK.

There are other differences between the schemes. Annual payments for those with HIV and advanced hepatitis C will be increased in Scotland from £15,000 to £27,000 to reflect average earnings. Those with both HIV and hepatitis C will have their annual payments increased from £30,000 to £37,000 to reflect their additional health needs. When a recipient dies, their spouse or civil partner will continue to receive 75% of their annual payment. Those infected with chronic hepatitis C will receive a £50,000 lump sum, which is an increase on the previous £20,000, meaning that there will be an additional £30,000 for those who have already received the lower payment. A new support and assistance grants scheme will be established in Scotland to administer and provide more flexible grants to cover additional needs. Scottish Government funding for the scheme will be increased from £300,000 a year to £1 million a year. As recommended, the Scottish Government will aim to deliver the new scheme through a single body so that those affected no longer need to apply to more than one body for funding.

However, the timing of the Scottish-wide payment system will depend on both Her Majesty’s Revenue and Customs and the Department of Health. Will the Minister outline what discussions the Department has had with HMRC about passing the relevant tax orders so that payments can be made to those entitled to compensation? They should be able to receive it with the minimum of fuss and should not be liable to tax. That has to happen whichever mechanism is used to make the new payments. To use the existing scheme to make the new payments, all four nations of the UK must agree, but only Scotland is signed up at the moment.

There are some important decisions to be taken before the Scottish scheme is established. They include changes to the threshold for receiving ongoing support, a re-examination of the ability of those with incomplete medical records to apply, an appeals procedure for those who think they should be in the Scottish scheme—that might apply to people resident in Scotland who were infected elsewhere, but want to apply to the Scottish scheme—a procedure for converting ongoing payments into a lump-sum settlement, and consideration of how the new discretionary scheme will operate in practice. The affected community will broadly welcome the replacement of the five trusts with a single scheme administrator, but the news that the new administrator of the proposed English scheme is likely to be a profit-making private company, which was not mentioned in the consultation documents, will be met with considerable concern. The tender process for a new scheme administrator started in September 2016. It was expected that the new administrator would take over in May 2017 following a transition period, but it appears that the deadline is now being pushed forward.

It is of grave concern to many hon. Members that Atos and Capita have attended Department of Health meetings to discuss bidding for the contract. It will be of utmost importance that the new supplier understands the complex needs of scheme beneficiaries and deals with all correspondence sympathetically. We all have concerns that if, as is likely, the successful bidder is a private company, it is not clear how the discretionary aspects of the scheme will be delivered. While the Department will own and publish a set of principles for discretionary support, as well as holding the budget, it will be up to the scheme administrator to consider applications for grants and other support. The Scottish scheme has the alternative option of a scheme administrator with more beneficiary involvement, and the original all-party group report recommended a similar thing. The Scottish discretionary support scheme will be better funded, as its funding is set to more than treble, while the English scheme will see a more modest 25% increase in 2018-19.

Before I conclude, I want to discuss some concerns relating to matters raised by the hon. Member for Worthing West (Sir Peter Bottomley) and health records. People who were infected during this disaster do not have the words “HIV” or “hepatitis C” on their death certificates, which is understandable due to the stigma attached to those conditions at the time. Will the Government or the scheme administrator consider that issue? There are people who were infected whose death certificates say something different, but their medical records will show that infection.

[Sir Peter Bottomley]

The hon. Gentleman makes a very good point. He might be about to put another question to the Minister, but in case he does not, I will. How will the Government try to get to the spouses of people who might have died 25 years ago? Those spouses might not know about this offer, because not everyone is involved in the networks.

[Chris Stephens]

That is very important. It is also up to us, as Members, to raise that issue with our constituents through newsletters and all the rest of it. The hon. Gentleman is right that there are people who lost their partners years ago and do not know about the scheme. I thank him for his intervention and I hope the Minister will consider that point.

There are clear points to address because we must ensure that the compensation is not subject to tax, as that would be ludicrous. We must also deal with the issue of the death certificates. Thank you, Mr Deputy Speaker, for allowing me to speak. I thank all hon. Members who have contributed to this first-class debate.

--- 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.