Selected Transcripts of the Archer Independent Inquiry
Thursday, 24th May 2007
Evidence of Mrs Walton
LORD ARCHER OF SANDWELL: Thank you for coming. Would you prefer to read it or would you prefer questions?
MRS WALTON: I'm a bit worried that it might be too long because I submitted two statements.
LORD ARCHER OF SANDWELL: I was really working from the one which I took to be your second statement.
MRS WALTON: Right, okay.
LORD ARCHER OF SANDWELL: Is that the one?
MRS WALTON: Yes, the second statement was written on Monday evening quite late, and you'll notice some grammatical errors in that.
LORD ARCHER OF SANDWELL: Please add anything you wish to add.
MRS WALTON: Yes, I think there's a lot to be said. So if I do the second statement, that will be fine.
LORD ARCHER OF SANDWELL: Yes. Would you like to read it or shall I ask you questions? Whichever you prefer.
MRS WALTON: If you'd like to ask me questions, I think.
LORD ARCHER OF SANDWELL: Yes. Your husband was Brian, wasn't he?
MRS WALTON: Brian, yes.
LORD ARCHER OF SANDWELL: And was he a severe haemophiliac?
MRS WALTON: Yes, he was severe. He had less than 1 percent, I think it was .6 percent.
LORD ARCHER OF SANDWELL: You were married in 1980, I think.
MRS WALTON: Eighty-three.
LORD ARCHER OF SANDWELL: Eighty-three. And presumably you knew then that he was a haemophiliac?
MRS WALTON: Yes. I didn't know when I first started going out with him because he never -- he didn't mention it. It wasn't something that he felt was necessary, but there was something about him in that -- because he had very very thin legs, and he limped from the severe bleeding he'd had. So it wasn't a surprise when he said, but it was some weeks into our relationship that he mentioned that. And it's just something that --
LORD ARCHER OF SANDWELL: Do you know what medication he was on at that time?
MRS WALTON: It would have been Factor VIII because he was injecting it at home.
LORD ARCHER OF SANDWELL: He was already?
MRS WALTON: Yes, in 1983, and he did it when he had a bleed. He would rest up and do his home treatment. In all the time that I was with him, he never went into hospital, he was never -- he'd had a lot of that in his early life as a child, spending time in hospital, and never went into hospital on the grounds of his haemophilia until it was the HIV that affected him.
LORD ARCHER OF SANDWELL: Until?
MRS WALTON: HIV affected him.
LORD ARCHER OF SANDWELL: Can everyone hear at the back? I think perhaps if you were a little closer to the microphone.
MRS WALTON: Is that all right?
LORD ARCHER OF SANDWELL: That's fine, thank you. When did he learn that he was suffering from hepatitis?
MRS WALTON: I don't know whether he did. He was…
LORD ARCHER OF SANDWELL: It was HIV from the beginning?
MRS WALTON: It was HIV. He was called in to -- at the time we were then living in Devon and he was called into the Exeter hospital, and just told that he was going to have a test, and so they tested him.
LORD ARCHER OF SANDWELL: So following the treatment they actually asked him to call in for a test.
MRS WALTON: Yes, he was going for his regular heamophilia check-ups and picking up his Factor VIII and I think it was about February 1985, they called him in at his regular treatment session. They said they wanted to do a test and at that time it was called HTLVIII test, it was AIDS, of course it wasn't HIV.
LORD ARCHER OF SANDWELL: But he wasn't showing any symptoms at that time?
MRS WALTON: No.
LORD ARCHER OF SANDWELL: It arose simply because they called him back for a test, having presumably reason to suspect what he had been given?
MRS WALTON: Yes. It was nothing. We'd been married less than two years, we'd moved down to Devon to start a new life and on the grounds of my profession, it took me to -- was a senior post in Devon, and he was then to get work in his field, it was retail management, and that was when he received the diagnosis. But it was six weeks before he was given the -- it was six weeks between him giving the blood and giving the results, and then saying, "Well actually we'd like to call your wife in too" so there was a --
LORD ARCHER OF SANDWELL: So for six weeks although they had suspected that he might have been given infected blood, they didn't say anything about it to you.
MRS WALTON: They didn't ask me, no, even though we were young and we'd just got married.
LORD ARCHER OF SANDWELL: Were you told what the test was?
MRS WALTON: I think yes, we did, we knew it was for that, but I think --
MS WILLETT: Do you know what that meant?
MRS WALTON: It was about -- we knew it was about AIDS, but even though we were hearing in the news and hearing about the connection with haemophilia, we didn't connect it with ourselves for some reason, because we thought "well we'd know, wouldn't we, if we had? They would have told us." So it was some vague chance of any infection, was something, and our information was coming through, you know, the media, so we were relying on the doctors and the medical profession who we trusted.
LORD ARCHER OF SANDWELL: After the tests had proved positive to, were you given any advice or counselling?
MRS WALTON: No. Our advice was to use condoms because I had a test and my test was negative at that time. My test came back negative. That then sent a whole series of questions in my mind, because we'd been together for years, having what we would class as normal sexual activity, and why wasn't I positive? And it made me wonder just how transmittable it was to have infection from one to the other, and maybe there were different routes of infection. So we did not, but I was tested negative, but then we were basically abandoned by – but my husband decided that -- we were abandoned by the Haemophilia Centre, you know, there was no -- there was no such things as counseling, I don't think counselling was the norm in those days anyway, whereas now you have a counsellor for any trauma.
LORD ARCHER OF SANDWELL: We've heard in some cases people were told "Well don't tell anybody". Did you get any advice of that sort?
MRS WALTON: Not in Exeter, no. I think it was pretty obvious what was happening at the time, for some strange reason we were getting newspaper through our doors that we hadn't ordered, and it was the Sun newspaper, so we were getting this mass hysteria at that time.
LORD ARCHER OF SANDWELL: So it was --
MRS WALTON: So we were seeing it and we thought is somebody putting this through our letterbox on purpose? We were slightly paranoid about it, but we saw the media response at that time and my husband said, "if I'm going to die I want to go back to be close to my family" which is in the Midlands so we then moved back and we started back at his old, well it's not a centre, it's a corridor, where he used to have his -- it wasn't a proper Haemophilia Centre; it was basically a haematology department, so we didn't have the sort of support network that maybe some of the larger haemophiliac centres, but eventually we did go down to Oxford some years later when we started --
LORD ARCHER OF SANDWELL: That was some years later?
MRS WALTON: Some years later because of the really bad -- because of the -- because it was also to do with the fact that I became positive, because we carried on living a life thinking well, what's happening here? And my husband went off the rails, and we got back together. He just -- he lost sort of all sense of proportion.
LORD ARCHER OF SANDWELL: Well we haven't quite got there but let's do it now, then. Let's talk about the effect on him. What sort of effect did it have on him?
MRS WALTON: He just wanted to live his life and he didn't know how long he had left to live. He was a haemophiliac. He was born in 1958, he probably wasn't supposed to live until his later years anyway, but by the time he got into his teens there a was a hope and a life because of Factor VIII and the better quality of life. And then suddenly he was now being told that actually you are going to die and you have got probably a year or two". That was the medical opinion, that at the time, that "You haven't got long to live" so he wanted to live.
LORD ARCHER OF SANDWELL: He was actually told he hadn't got long to live?
MRS WALTON: Yes, that was the whole and so --
LORD ARCHER OF SANDWELL: So as you say he wanted to pack as much into his life possible.
MRS WALTON: Pack as much into his life as possible, he didn't want a sensible wife who was saying things that -- you know, the normal. So we spent a lot of money, and then he started -- he did start drinking quite heavily because of it. It affected him, but I understood why it affected him. I understood why he felt this way.
LORD ARCHER OF SANDWELL: There was a time when he wanted to separate?
MRS WALTON: He did.
LORD ARCHER OF SANDWELL: Or you did separate?
MRS WALTON: He did. We separated because he was just completely off the rails. I think he just sort of thought well, you know, things weren't working out.
LORD ARCHER OF SANDWELL: Happily your marriage was restored.
MRS WALTON: It was. It was only a separation for a few months. It was over a period of about six months and we returned and then we had discussions about what it was we wanted in life and one of those things was children so we hadn't been having sex because of the partings so we went back to my -- to the haemophilia doctor and we said, you know, we're interested in this. We wanted advice. Again, because of this, what's the transmission rate, and, you know, we had had sex for six years before, and there was no transmission and he said, "It's not a very good idea but if you want to go ahead we'll monitor it." It was 15 minutes of his time. There was no discussion about ovulation, whether we were actually fertile, either of us, in any case, so we were young and we went along with it. It was a subject of a court case, that, on the grounds of professional negligence and that was settled in 1992 shortly before my husband died. But it was about the counselling and the point of it was not that we could do any good to us --
LORD ARCHER OF SANDWELL: And you still hadn't made it widely known how you had been diagnosed presumably?
MRS WALTON: What do you mean?
LORD ARCHER OF SANDWELL: Your family, did they know? Or friends and neighbours?
MRS WALTON: Well again, very few. No neighbours. We lived in the middle of the country side and we didn't really speak, we were happy on the edge of a country village, and we didn't -- we basically from those early days, as I said in my statement, battened up the hatches and were too frightened to tell anybody because of the hysteria around it, and that included family and friends, and I mean even to this day people don't know. There are people who don't know, but that's partly to do with the history and that's partly to do with the fact that, you know, you don't want people knowing, because as I've said in my statement, people think as a white woman with HIV, that you're a prostitute or a drug user, and I don't want to have to preface everything by saying well actually, you know, I am the wife of a haemophiliac. I don't see why I should.
LORD ARCHER OF SANDWELL: So even if people were thinking that, you had it in your mind that they might be thinking that.
MRS WALTON: Yes, and if I'm at the doctors -- I live in a small town. I'd gone back to live in a small town. I was very shocked this morning when I arrived here and I was approached and said, "you know, are you Claire from so and so?" And I was saying "How did you know?" I was very shocked. I think it is very important that people of that town know that there are people who are living there who have HIV and they feel unable to just talk about it freely. However, I don't want to be associated with it because I just want to walk in my street in the same way as if I had cancer or MS. I'm private. I don't want people knowing. That's such a juicy story, and, you know, then again it's -- when I'm like at the doctors, I -- when I had to register with the doctor, I thought I now know that there's going to be people within that town who will be, you know, nodding and winking, and, you know, I don't want that. There is a -- that is as I say the problem --
LORD ARCHER OF SANDWELL: It's wiser to be open about it because otherwise people are going to guess, presumably?
MRS WALTON: Yes, in some ways. So to this day, now, there are a few people in -- who know me, who I tell because it's relevant for them to know. And as I said when I was at the -- I was studying for the MA here in London and I became ill and it was suggested I didn't tell people I had HIV, that I tell them because they were --
LORD ARCHER OF SANDWELL: That was suggested to you?
MRS WALTON: Yes, "Don't tell them, they might think you're a drug user or prostitute" and I thought this is just -- this is three or four years ago. So recently. That those kind of attitudes still exist, and I was actually studying with the Royal College of Art and I just thought well actually, I think that if I can't speak out at the Royal College of Art about my status, so I did, and actually of course I did and they were absolutely wonderful, the board held a -- because I had to stop and I had to abandon it, and the board held over my place for me to go back as and when I'm well enough. You know, I have to obviously apply through the normal re-examinations and things but they weren't at all, and I wouldn't have expected them to, and so I'm glad I didn't listen to that advice.
LORD ARCHER OF SANDWELL: Well then, in 1989, I gather, about four years after he was diagnosed, Brian developed a lump on his knee?
MRS WALTON: Yes. Again, he'd been going through this mad phase and a few years of wild life, just wanting to live and do everything he could, and --
LORD ARCHER OF SANDWELL: And the diagnosis --
MRS WALTON: Was non-Hodgkins lymphoma and he was diagnosed with that and they said, that's an actual -- it's related to HIV. His GP was saying actually it's not. I mean he thought that lots of young lads get non-Hodgkins lymphoma but it was deemed to be and so that's why he was then started on that AZT treatment which in those days was very very high doses, and he started taking it and he didn't like the effects of the AZT.
LORD ARCHER OF SANDWELL: What sort of effects did it have on him?
MRS WALTON: He just felt so -- I don't know, just kind of strange inside but also at the time, again, it's sort of a question of sort of nonsense in a way but you actually had to take it every 6 hours on the dot, which meant waking up, not sleeping properly and I felt well that in itself is -- has a detrimental effect on your sleeping pattern, and I don't know whether it was really necessary but no, that's what they said you must do it this way. You must otherwise the effect will be -- so we had to, you know, take it or, you know, 12 o'clock at night and wake up at 6 o'clock in the morning and take it at 6 o'clock in the morning.
LORD ARCHER OF SANDWELL: Then he went to Iceland in 1991.
MRS WALTON: Yes.
LORD ARCHER OF SANDWELL: Still trying to live a normal life?
MRS WALTON: Well by that time he had had the radiotherapy to reduce the lump. And again, a normal life? He wanted to lead a superhuman life, but that was his spirit, he was a great bloke, he was a decent fun-loving man and, you know, he -- his parents, who are with me today, you know, are decent people who brought him up in a certain way and he had a great work ethic and he decided to take a Land Rover or he bought a Land Rover and we had it kitted out as a camper conversion and he drove it on this long journey to Iceland because he had a passion to see Iceland, and --
LORD ARCHER OF SANDWELL: And then when he returned he was suffering weight-loss, I think?
MRS WALTON: Yes. He'd lost an awful lot of weight, partly because of living for five weeks in a camper van and living off rehydrated food and Iceland at that time, and it probably still is, an incredibly expensive place to be.
LORD ARCHER OF SANDWELL: And he died eighteen months later?
MRS WALTON: Yes, because of what happened was the non-Hodgkins lymphoma had come back, and then he was on more chemotherapy and then the effects of the chemotherapy started to go in, and the AZT he had been on, his --
LORD ARCHER OF SANDWELL: We haven't asked you about the
effect on you of your infection.
MRS WALTON: Right.
LORD ARCHER OF SANDWELL: Did you feel --
MRS WALTON: No. I mean the first six years of my HIV infection, I didn't think about myself because I was still thinking of the effects on my husband and I was well, and remained extremely well, until – for 16 years, for years after my husband died and then I came to London and I was -- you know, I was having a great life, doing a masters degree, and I was partly at the V and A, based at the V and A, and I was doing a masters degree because my career had been suppressed slightly, obviously, and I hadn't been able to attain what I'd like to have done within my career so this was an opportunity to go into my career and it was then I started to get quite ill and I realised I was gradually getting further and further and didn't want to actually admit that. Having lived so long and so well you don't really want to. Because I haven't got other conditions, you know, I have no other conditions --
LORD ARCHER OF SANDWELL: So it has not had very serious effects on your income at the moment?
MRS WALTON: It has seriously affected the income because what actually happened, because doing an MA was one thing and that would have enabled me to get work in the very specialist field I work in, it's not a very highly paid but it's very lovely privileged work and in a sense would have been recompense for any huge salary, but it was salaried enough, but because I had to start BMA, I had to go -- I was on benefits and I still remain on benefits and I'm very well today even though I nearly died, I had PCP, I had CMV on the brain. I then later on went on to have more confusion, and I spent two very nasty, very traumatic periods in hospital alone because I had no one to care for me in the hospital. I've come back -- I've gone back to live in a small town, to be on my own -- to be with my family around me and I've gradually built myself back up to health. Eighteen months ago I had hardly any hair, I was two stone less than I am now.
LORD ARCHER OF SANDWELL: So at least through will-power and determination you're coping?
MRS WALTON: And good medical care. I mean I have to thank Professor Margaret Johnson because I have a very good relationship with her, and she's on a team at the Ian Chelson Centre(?) [Charleston].
LORD ARCHER OF SANDWELL: What financial help have you had from the Government? Have you had any?
MRS WALTON: In the early days we were given -- my husband was given £32,000 through the payouts. He had an original £20,000 exgratia.
LORD ARCHER OF SANDWELL: That's from the Skipton fund?
MRS WALTON: No, the Macfarlane Trust.
LORD ARCHER OF SANDWELL: Macfarlane?
MRS WALTON: Yes, then I received £23,500 through that scheme as well. I do not understand, and I don't understand today, why that -- who made the decision where you get 23 and a half thousand to a single man, 32 to a married man and --
LORD ARCHER OF SANDWELL: Well, I think we shall hear some evidence on that later.
MRS WALTON: But to me, if you're a single man you lost out because it's actually more expensive to have been – you know, why would Brian have got more money than a single man? You know, that's why equality actually -- you got it. When you start to means test in that sort of way.
LORD ARCHER OF SANDWELL: Yes.
MRS WALTON: So -- then I -- I was working anyway, so I was working and working all the way through my husband's death, I was back at work two weeks after his death because there wasn't much to do and I was very well. Extremely well and that's when I moved to London at got involved with HIV organisations, I worked for an HIV organisation called Facts in Crouch End, or was, and that was closed, and I started to mix with hundreds of people who were HIV positive across the world and to understand their -- you know, it wasn't just within the haemophilia community. In fact I had hardly no contact with the haemophilia community until recent years. It was only three or four years ago I started to meet people with haemophilia, except once back in the early days, we had a weekend away with some women, and so I got to see the sort of responses to how other risk groups had received in terms of health and support, you know, the Fact centre was a predominantly white, gay man's club if you, like, that they had set the centre up there and it has absolutely fantastic facilities where they had complimentary medicines alongside mainstream doctors coming, in, they had a cafe and a gym, and activities, and --
LORD ARCHER OF SANDWELL: These were people as you say not necessarily haemophiliacs?
MRS WALTON: No, I don't think I ever met -- maybe I'm wrong but they never mentioned haemophilia but I was involved in that because I was based there because I was working for Positive Futures which has now continued, but it was in the early days of Positive Futures, which is a programme which enables people to continue working with HIV and they kept calling it the "Get back to work scheme" which was slightly annoying because some people had never not worked, and it was there that I learned a lot about it, and I again gave statements to the UN regarding immigration and the discrimination where I actually named the countries in a statement. It was through an American organisation that enabled me to make those statements where I helped the America, Australia,Russia. I think we mentioned Denmark and then Denmark turned up -- or it was Norway, saying "We don't discriminate" and it was because we had been given wrong information.
LORD ARCHER OF SANDWELL: Have you made that statement available to us?
MRS WALTON: Yes, it would be --
MR MEHAN: In the public domain you mean.
MRS WALTON: Public domain. Just to highlight how we are discriminated against.
LORD ARCHER OF SANDWELL: Yes.
MRS WALTON: So that's why, in my statement, I make it that we have been, as a community, the haemophilia community have been woefully let down in terms of support. I see in terms of help, in terms of counselling, in terms of financial assistance and getting benefits, I certainly have never had any help at all, in the early days.
MS WILLETT: With all this experience and all the – you have expressed to us all the things that have happened
and it's complex and diverse and not just about haemophilia, where do you think we've sort of got to now?
MRS WALTON: Who? Society?
MS WILLETT: Yes.
MRS WALTON: I think society still is -- there is still backwaters where people, if you mention HIV or AIDS, they will, you know, still walk away and not think (inaudible). Unfortunately, that still happens and it is also still very much underground. As I say in my statement, racism still exists. It may not be – you may not be allowed to make jokes and things in society but it still exists.
LORD ARCHER OF SANDWELL: I think we're getting a little wide of --
MRS WALTON: Yes, but it's about what HIV is. I mean that's what we're having to live with and we live with that on a day-to-day basis and it's why I got quite upset this morning when I heard somebody come up to me and say, "You're Claire from so and so" because I'd love to be able to just walk down the street but it's the...
MS WILLETT: Thank you very much. That's very interesting and helpful.
LORD ARCHER OF SANDWELL: Thank you very much. You're most helpful.
MS WILLETT: Okay, thank you.
LORD ARCHER OF SANDWELL: There are those who would benefit from a short break. Shall we have a 10-minute break?
(A short break)