Contaminated Blood

Debate between Peter Bottomley and Andy Burnham

Tuesday 25th April 2017 Commons Chamber

[Andy Burnham]

My hon. Friend has put her finger on the point. With Hillsborough, when we finally got to match up documents held at a local level with those held at the national level, the full picture began to emerge. It is my contention that exactly the same would emerge here. The direct examples of a cover-up that I am about to give, relating to individual cases, would then be put together with what we know about documents held—or, indeed, not held, which itself implies wrongdoing—at a national level. In the end, it is the putting together of that picture that gives people the truth and allows them to understand how this happened. I will come directly to that point later.

I will focus on three cases. I highlight them not because they are the only ones I have seen or been sent, but because I have met or spoken directly to the individuals concerned, have a high degree of confidence in the facts and believe that these cases are representative of many more. The first case is of a gentleman who does not want to be named. I will call him Stuart, but I do have his full details.

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

One of the reasons why this has not taken off widely as a real campaign is that victims understandably do not want to advertise their condition to those around them. I pay tribute to those who have talked to Members of Parliament, even on a confidential basis, so that some of us have some ammunition.

[Andy Burnham]

The hon. Gentleman is absolutely correct. There is a stigma related to HIV and hepatitis. People do not want to talk about it openly. Although I have drawn a parallel with Hillsborough—the hon. Gentleman was outstanding in his support for me on that issue—there are many differences, and one major difference is that, with Hillsborough, the event happened on one day, and everybody was watching it and can remember where they were when the pictures came through. This scandal was a silent one, which affected people in all parts of the country and all walks of life—not people from a similar place. These people were spread about and unable to organise in the same way the Hillsborough campaigners were. That is another reason why they have not been able to move things forward, and the reason the hon. Gentleman gave is true, too.

When Stuart was six years old, he was sent by Maidstone hospital to the Lewisham and Oxford haemophilia centres to have tests to see whether he had haemophilia. When he was seven, they wrote back and said that all the tests were normal and that he did not have a bleeding problem. When he was eight, he attended Maidstone hospital with a swollen knee—nothing more. It was not life threatening, and he had no bleeding problem associated with it.

Then, with no warning to Stuart or his parents, Maidstone hospital treated him with 12 transfusions of contaminated blood products over three days. According to his medical records later, that should not have happened. Then, in 1986, the hospital, unbeknownst to Stuart, carried out an HIV and a hepatitis B test on him. He was never tested for hepatitis C, even though his records show that a test was available at the time. He was not tested in 1989 or called back as other tests became available. He has all his medical records, but one thing is missing: the batch numbers for the contaminated blood products.

Stuart was eventually told he had a hepatitis C infection in—listen to this, Madam Deputy Speaker—January 2013. He was also told that it was too late for him to pursue a court case, despite the fact that legal experts said that what had happened to him was negligent and he firmly believes there has been a cover-up.

Let me move on to the case of a woman called Nicola Enstone-Jones. She wrote:

“As a female with haemophilia diagnosed in the ‘70s. From the age of 9 my parents spent years trying to find out what happened to me after receiving Factor VIII, this was in 1980…Dr’s denying anything was wrong with me, referring to me as having psychological problems, as there was nothing wrong with the treatment they gave.”

She says that that was not unusual for haemophiliacs growing up then. She goes on:

“It was when I was 24”—

24!—

“in 1995 that I asked a nurse if I’d ever been tested for Hepatitis C, as my mum had seen on the news about Haemophiliacs being diagnosed and dying from this new strain of Hepatitis, and all the signs and symptoms listed was me.

The nurse laughed at me and said ‘you won’t have that’; then came back with my medical notes and informed me I was positive to Hepatitis C from a test…done in 1991. A test I knew nothing about... like a true haemophiliac and after spending years of searching for answers I had suddenly found out why I had suffered health problems since childhood.”

However, it was only later, when Nicola was able to access her medical notes, that she found an entry for 1990, which she has drawn to my attention, and I have it in my hand. The notes say: “Discussed hepatitis C”. Nicola has told me directly that that never happened—it was never discussed with her in 1990. She found out for the first time in 1995.

This story actually gets quite a lot worse. Let me read out what Nicola goes on to say:

“Little did I know almost 19 years later I would be at a police station reporting what I”

believe

“to be a criminal act and a form of abuse on my own child, once again…Dr’s performing tests”

without consent,

“another well-known”

practice

“which Haemophiliacs are sadly used to.

I had found out in 2013 that my 9 year old haemophilic son had been tested for HIV and hepatitis’s and no doubt a whole host of other viruses and pathogens, just like I had been when I was younger. Given my daughter has a bleeding disorder too, there is no doubt in my mind she will have been tested...I found this out third hand, by chance in a letter which was another professional”

asking

“if my son needed treatment abroad. The letter stated ‘This 9 year old haemophilic has a factor VIII level of 10% and…has been tested for HIV and hepatitis…which he is negative to.’”

She had never been told about this or given consent for her son to be tested. She says:

“Surely this isn’t right, in this day and age”.

In my view, it is a criminal act to test a child without a parent’s knowledge.

Let me come on to the third case, which, in my view, is the most troubling of them all. It relates to a gentleman called Kenneth David Bullock—Ken Bullock. Ken was a very high-ranking civil engineer who worked around the world. In his later career, he spent time advising what was then called the Overseas Development Agency. He was a haemophiliac. Sadly, Ken died in 1998—a very traumatic death, unfortunately. Let me read from the letter that his widow, Hazel Bullock, sent to me a few weeks ago:

“I am so relieved to hear you are still committed to an active”

inquiry into

“the contaminated blood tragedy…Between the 15th November, 1983 and the 3rd December, 1983, my husband stopped being a Haemophiliac patient who had been infected with NonA-NonB type Hepatitis to being a clinical alcoholic…This accusation continued and escalated during the next fifteen years completely unknown to him, he was refused a liver transplant in 1998 and left to die still unaware of these appalling accusations. He did not drink alcohol.”

Mrs Bullock has examined her late husband’s medical notes in detail. Again, I have them here in my possession today. An entry in his notes from February 1983 says, “Acute Hepatitis”. Another from March says:

“NonA NonB Hepatitis which he probably obtained from Cryo-precipitate”—

the recognised treatment at the time. Again in 1983, the notes say:

“In view of his exposure to blood products a diagnosis of NonA NonB was made.”

However, it would seem at that point that all mention of blood products was to be stopped, very suddenly. Mrs Bullock says:

“They were never again to be found anywhere in my husband’s notes. From the 15th December, 1983 all the hospital records refer only to alcoholic damage to the liver. I have in my possession full copies of all the following notes.”

In December 1983, the notes say, “alcohol could be considered”; in 1994,

“likes a few beers at week-ends”;

in 1995, “alcohol related hepatic dysfunction”; in 1995 again, “clinical alcoholism”; and in 1996, “chronic high alcohol consumption.” In 1998, the year that Mr Bullock died, they say, “alcoholic cirrhosis.”

Mrs Bullock concludes her letter:

“My husband died on the 3rd October, 1998. At no time during this 15 years should alcohol have been mentioned. My husband’s rare and occasional glass of wine was minimal. He never drank beer or spirits. Alcohol was never a part of our lives and he had his last glass of wine on 18th June 1995, my 60th birthday. My husband died completely unaware of these accusations that have shocked family, friends and colleagues alike.”

Just as the evidence of amended police statements provided the thread that we eventually pulled to unravel the Hillsborough cover-up, so I believe the evidence that I have just provided must now become the trigger for a wider inquiry into establishing the truth about contaminated blood. There is a very disturbing echo of Hillsborough—is there not?—in what I have just said. People who were the victims of negligence by the state were suddenly the victims of smears perpetrated by those working on behalf of public bodies, particularly smears related to alcohol, suggesting that the disease that afflicted Mr Bullock’s liver was self-inflicted. That reminds me, of course, of the front-page newspaper stories that appeared straight after Hillsborough that alleged that Liverpool fans were drunk. It is a time-honoured tactic—is it not?—to deflect the blame from where it should be over to somewhere else.

It is of course possible that in each of the cases that I have mentioned the hospitals and clinicians concerned were acting on an individual basis to prevent their negligent practices from being known. I have to say, however, that I doubt that that was the case. My suspicion, as I said a moment ago to my hon. Friend the Member for Kingston upon Hull North, is that there are documents held at a national level, either by the Government or by regulatory or professional bodies, that point to a more systematic effort to suppress the truth.

I actually have two documents in my possession—this will save the Minister and the Government time if they want to suggest that there are no such documents—and I want to put them on the official record. The first is a letter sent in January 1975 by Stanford University’s medical centre to the Blood Products Laboratory, which was the UK Government’s wholly owned blood products operation. The letter goes to great lengths warning about the risk of the new factor VIII products that were coming on to the market. The gentleman who wrote it, Mr Allen, said of one particular product that the

“source of blood is 100 percent from Skid-Row derelicts”.

He was writing to warn the British Government about the blood products that were being used.

The second document is from the Oxford Haemophilia Centre and it was sent in January 1982 to all haemophilia centre directors in England. It says of the new products coming on to the market:

“Although initial production batches may have been tested for infectivity by injecting them into chimpanzees it is unlikely that the manufacturers will be able to guarantee this form of quality control for all future batches. It is therefore very important to find out by studies in human beings to what extent the infectivity of the various concentrates has been reduced. The most clear cut way of doing this is by administering those concentrates to patients requiring treatment who have not been previously exposed to large pool concentrates.”

In other words, it is saying: let us find out whether there is “infectivity”—to use its word—in the products by using patients as guinea pigs, without regard for the consequences. That is proof, in my view, of negligence of a very serious kind.

That brings me to the point that my hon. Friend the Member for Kingston upon Hull North raised earlier. When we read the warning from the Americans in 1975 about blood products being derived from blood that had been taken off convicts on skid row and the letter some seven years later in which the Oxford Haemophilia Centre stated that it was necessary to push on with trials—to find out whether the products were infectious by giving them to patients—we soon start to see that there was something here that needed to be hidden.

In addition, we must consider the fact that all the papers belonging to a Health Minister were, as I understand it, comprehensively destroyed under something called the 10-year rule. I have been a Minister, and I have never heard of the 10-year rule. Have you, Madam Deputy Speaker? It is a new one on me. A Minister’s papers were destroyed without his consent. To me, that sounds alarm bells and suggests that something is seriously amiss.

--- Later in debate ---

[Andy Burnham]

I think it has such a feel. For me, the whole thing about finance—it is always about finance, and about whether we can give them a bit more—has been helpful to the Government, because it has meant that they have never focused on the issue they should really focus on. As I said at the beginning, if this had been known about, the wave of support behind the people struggling to find out the truth would have been massive—absolutely massive—and the Government would have had nowhere to go and would have had to respond. Consequently, people are still struggling, such as my hon. Friend’s constituent, and I hope that they will not have to struggle for much longer.

[Sir Peter Bottomley]

It seems to me that the right hon. Gentleman is making three major points. The first is that those still alive who are affected and their families need proper, generous help without delay. The second is that there should be an inquiry into what went wrong all the way through, especially about whether people have interfered with the preservation of evidence. Whether people are prosecuted is a separate issue, but actually knowing what happened is what matters most. The third point—this is really the one in my mind—is that there was a difference, as Richard Titmuss pointed out in 1970 in his book “The Gift Relationship”, between blood donations in Britain, where they were freely given by the healthy, and donations in the States, which came from the sources the right hon. Gentleman has mentioned. If that was stated in a book in 1970, people should have paid attention as soon as they had any warning at all, whether from Stanford or from anybody else.

[Andy Burnham]

That was the direct content of the Stanford letter. There was a worry that the NHS was using such products in a completely different context, not understanding the difference between the two systems. That was the Stanford letter.

I am not standing here claiming to be an expert on all the papers, because I am not; I am saying what I know, from the people I have spoken to, to be wrong, and linking that to the documents in order to say what I believe to be the case. I may not be right, but we need to find out whether I am right, and that is the point that I will be putting to the Government.

--- Later in debate ---

[Sir Peter Bottomley]

That is one of the reasons why I believe that over the election period the advisers to Ministers—not just to Health Ministers, but perhaps also to Home Office Ministers—should consider what could be obtained by the kind of call for evidence and inquiry that the right hon. Member for Leigh has rightly proposed.

[Andy Burnham]

rose—

[Sir Peter Bottomley]

If the right hon. Gentleman has any other points he wants to make through me, he is welcome to do so.

[Andy Burnham]

I am grateful for the opportunity. The Minister was very kind in her remarks, but the point that perhaps was missed when referencing Archer and Penrose is that I am calling for a different process that takes documents at a very local level and matches them with documents higher up the chain. It is only then that we can put the jigsaw together and start to understand why someone was acting in a certain way in a particular hospital. That is what we are looking for, and that was the strength of the Hillsborough independent panel: it was able to paint that canvas and put all the pieces of the jigsaw together.

I will send the evidence to the Department. The amended police statements only came to light properly just before the 20th anniversary of Hillsborough. What I have presented to the House tonight is altered medical records—that is a fact; that has been given to me. In my view, that is the same trigger and it should be looked into so that the facts can be established. That is new evidence that the Government now need to consider, to take a new decision on this.

[Sir Peter Bottomley]

The right hon. Gentleman has taken the words out of my mouth, and has said it better than I could have. We are all grateful to him. The point is that this scandal should never have happened, when it was started it should have been stopped, and when it had been stopped people should have known why it had gone on for as long as it did. The right hon. Gentleman has done a service.

Mental Health

Debate between Peter Bottomley and Andy Burnham

Thursday 14th June 2012 Commons Chamber

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

It is a delight to congratulate the hon. Member for Vale of Clwyd (Chris Ruane) on his speech. We are having a debate of which the previous speakers and the Backbench Business Committee should be proud. I missed out on a lunch the other day and went with my hon. Friends the Members for Broxbourne (Mr Walker) and for Loughborough (Nicky Morgan) and others to appear in front of the Committee. They were tough and they were clear. We made our point that the subject needed a debate, and the issue then was whether it should be in Westminster Hall or in the Chamber. I think that if it had been in Westminster Hall, the impact would not have been so great.

When I was first elected to the House of Commons, if a Member of Parliament was thought to have gone mad, the Speaker would refer them to two people nominated by the Royal College of Surgeons. One of my early interventions was to suggest that psychiatrists might be rather more useful. If the Bill taken up by my hon. Friend the Member for Croydon Central (Gavin Barwell) gets through, perhaps that approach will be thrown away in turn.

Again when I was first elected, The Times and The Daily Telegraph would report debates and pick up a good point from everyone’s speech. If that happened after today’s debate, people’s understanding of the experiences of the lack of mental health, and of more extreme, occasionally disabling mental illness would become greater, deeper and wider. That would give comfort to the hundreds of thousands of people who care for people who are experiencing the lack of mental health.

[Andy Burnham]

I apologise for interrupting the hon. Gentleman so early on, but he is making such an important broader point about media coverage of mental health. Would he want to pay tribute to the Sunday Express, which has led a campaign that was mentioned by the hon. Member for Loughborough (Nicky Morgan)? One would not necessarily expect a newspaper to run a mental health campaign, yet it has. That is precisely the kind of media leadership that we need to see on this issue.

[Sir Peter Bottomley]

I join the right hon. Gentleman in saying that. I was trying to say things that had not been said already, and there has already been a tribute to the Sunday Express. I would add that several journalists have been prepared to speak about their own medical conditions that have challenged their ability to live or to work effectively. I am not saying that we should all have to spend our time saying what our physical or mental experiences have been, but it does help if it is regarded as being as normal to talk about having had an episode of depression as of having had a basal carcinoma removed or having recovered from a broken hip.

I pay tribute to the hundreds of thousands of people who care for those experiencing the lack of mental health. I also pay tribute to the professionals, particularly to Lisa Rodrigues, who is chief executive of the Sussex Partnership Trust. She has spoken of the services it provides across East Sussex, West Sussex, Brighton and Hove and Hampshire, and the 27,000 young people with whom she and her colleagues come into contact each year. They are not all experiencing real disability, but some will.

When I became roads Minister, one of my ambitions was to try to get the number of road deaths down below the suicide rate. Young people’s suicides number about 900 each year. The total number of road deaths among adults and young people is 1,800. The road deaths figure has come down from 5,600 a year to 1,850. Would it not be good if we could do the same thing for self-destruction and the penalties that that imposes—not only the shortened life but the damage to those around the person who has died?

My wife was a psychiatric social worker before she became a Member of Parliament, a Health Minister, and then Secretary of State for Health, when she took mental health issues very seriously. She worked with those at the Maudsley Institute of Psychiatry where, with one of her colleagues, Peter Wilson, she ran a support service for teachers. If we are to start being concerned with young people, we need to make sure that those who are in contact with them—parents, and teachers in primary and secondary schools—have an understanding of what is normally unhealthy, if I can put it that way.

One young person in four experiences some kind of mental health episode. We need to know how much of that involves a relatively normal experience from which they will recover. We also need to identify the one in 10 who will probably need help from someone with experience or specialist qualifications, and the 2% or 3% for whom the experience will be disabling.

YoungMinds is an association with which Peter Wilson was associated—I think he might have created it. It has a manifesto in which young people say that if they can get help when they are young, many more of them could be kept out of prison and psychiatric hospital, and kept in work and leading the kind of life that contributes to society.

I once met someone who had had experience of schizophrenia. There was a fine mental health project just outside my former constituency, and he told me that he was glad to have got to know about it. He became a client of the project. Six months later, he became a volunteer. A year later he wrote to tell me that it was the proudest moment of his life, as he was now a taxpayer with a paid job. He was given the opportunity to take those steps forward, in an environment in which everyone knew what was happening and could share in it and give support when appropriate. Those opportunities matter.

Had there been more time, I would have been tempted to talk about a range of issues, giving a sentence or two to each, but I do not think that that will be possible. I would say, however, to those who suffer at times, or constantly, from depression, anxiety, obsessive compulsive disorder, phobias, bipolar disorder, schizophrenia or personality disorders—I could go on—that information on most of those conditions is available on the websites of the organisations that provide help.

About 31 years ago, I was appointed to the council of Mind, formerly the National Association for Mental Health. The reason for that was that the then Conservative Government wanted to give the organisation their support, and its then general secretary was thought to be left-wing; I was there to provide balance. I am not sure how my Whips would regard that decision today.

The Mental Health Foundation does good work, and I also pay tribute to the Samaritans for the help that they give to people about whom they are concerned. Their website contains information on how we can help someone, even if we are untrained. It suggests avoiding the “Why?” question, as that can be regarded as challenging. Instead, it suggests asking:

“When—‘When did you realise?’ Where—‘Where did that happen?’ What—‘What else happened?’ How—‘How did that feel?’ In an ideal world what would you like to happen next? Would you like me to come with you?”

Standing beside people in that way can be a pretty effective approach.

I want to give the House one or two examples from the weekly newsletter from Lisa Rodrigues of the Sussex Partnership Trust. I try to send it on to two or three other people each week, to whom some of the points might be relevant. One week she talked about cancer, describing how, in the 1950s, Sir Richard Doll and others had started to examine the causes of lung cancer, and to realise that asbestos could also have a serious effect on breathing. She wrote:

“So why am I talking about cancer? It is because today dementia is where cancer was all those years ago…Why Sussex? Because we have the highest percentage of old people in the country living here. And why me? Because specialist mental health services hold the key to unlocking the potential in primary care, acute hospitals, local authorities, the voluntary and nursing home sector to provide better treatment and care to people with dementia, and support for their families.”

Lisa Rodrigues also recently attended a conference on how to get the various groups to work together more effectively, which is vital for people and their families and carers. If only they could find a one-stop shop to refer them to a place where they could be embraced as a person, a household or a family unit. She said that if we could get our mental health services working more effectively, our physical health services would have far less to cope with. That point has also been developed by other hon. Members this afternoon. She also wrote in her newsletter:

“We have a dream. In our dream, our psychiatrists, nurses, social workers, psychologists, therapists, care staff, receptionists and anyone else who comes into contact with the 100,000 people we serve each year will have the best possible tools to do their jobs. This will include a small, lightweight…portable device via which they can access patient records”

and the background of all the people they are in contact with. Up to now, that has not been possible.

Lisa Rodrigues talks every two or three weeks about employees who have done something special. In one example, she talks about the staff who have worked on a clinical reception and their helpfulness to patients and other visitors. She goes on to mention a person whom I have not met called Jackie Efford, a nurse in the health team at Lewes prison, who

“works flexibly so that, when prisoners arrive late into the night, she comes in to assess them and respond to any urgent physical or mental needs. Imagine being a prisoner and what a difference it would make to have a meeting when you first arrived with a compassionate and effective nurse.”

Lisa Rodrigues also talks about the child and adolescent mental health services. She says that the name is

“no longer fit for purpose. The word adolescent has negative connotations. And young people don’t respond positively to the term mental health.”

We must find the right language, not for political correctness, but to help people more effectively.

It would be easy to say more on this issue. However, I want to end by saying that if we have to wait another year to develop these themes, Parliament will not be doing its job properly. We should not have to rely on the pleading and cajoling that we provided at the Backbench Business Committee. Debates on this matter ought to be built in, rather than bolted on.