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2,200	22	QUESTION: What can you recall about that?2 ANSWER: At that point I asked my husband at that time to go out and purchase a camcorder for me so that I could make a video for my son, for whenever he was older he would know who I was.
2,201	22	QUESTION: You say, in your statement, in 1998 or thereabouts you started a second course of treatment, Interferon an d ribavirin. Again that involved injecting yourself three times a week and taking tablets for six month s? ANSWER: Yes, that's correct.
2,202	22	QUESTION: Did you experience any side-effects from that cours e of treatment? ANSWER: Yes, very much so. I basically didn't have any l ife at all. I would be lying on the sofa with blankets round me, a fire raging, even though it was the mid dle of the summer, constantly cold. To this day I stil l feel the cold, very much so, and no appetite, loss of weight, and all of that took a toll on my first marriage, which led to it ...
2,203	22	QUESTION: You have said this in your statement: "During this time the treatment took a lot out of me. I became a recluse. I lost friends, had no social life, no energy, spent most of my days with my head stuck in the toilet being sick, trembling unde r a blanket due to extreme cold and fatigue." ANSWER: That's correct. 3
2,204	22	QUESTION: You had to rely upon close family members to help y ou, both in terms of looking after yourself and looking after your child? ANSWER: Very much so. I had to lean very strongly on my mum and dad.
2,205	22	QUESTION: You have said, as you have just explained in your o ral evidence, that was the end of your first marriage. You also stopped telling people around this time th at you had hepatitis C. Why was that? ANSWER: Because of the stigma that came with it. You cou ld see people looking at you, whenever you would say "I've got hepatitis C but it's nothing to worry abo ut, it is just a wee virus" is the way that I would hav e said it. You could see them looking at you, and th ey would say to you "Is that not the same as AIDS ?" T hen you were having to explain yourself every time and say: "No, you can't catch it the same way. It is n ot the same as that". You got that no matter where yo u went. So I just started to say that I had a liver problem, which led to people then turning round and accusing me of being an alcoholic.
2,206	22	QUESTION: In around 2004 you were told that the virus was now in a dormant state, that you had cleared it, or the levels had become undetectable. Is that right?4 ANSWER: Yes. It was [name redacted] that took me to a sid e room to give me the great news that they were all thrilled. They had cured me.
2,207	22	QUESTION: You said in your statement: "I thought I would get my life back and that I could finally make some plans." Did your life improve or alter after that? ANSWER: No. My health basically has just gone from -- go t worse and worse over the years. I'm still no wiser to what it all came down to. Was it down to the treatment? Was it down to the hepatitis C? I am basically none the wiser.
2,208	22	QUESTION: At some point, you have estimated in your statement it may have been around 2006, you received a letter ab out the risk of vCJD. What can you recall about that letter and its effect on you? ANSWER: Yes. I received that letter. I just thought "Not again. I can't take any more of this. I have just been told I am all clear of hepatitis C. Now I am having to declare this". It just seemed to get wor se and worse, depression, wondering what was going to come through the door basically next.
2,209	22	QUESTION: Did you receive any further information about vCJD or was it simply the letter drawing attention to the possible public health risk? 5 ANSWER: It was just simply the letter drawing the attenti on and to notify hospitals if I was going to have any treatment or anything done, that I was at risk.
2,210	22	QUESTION: Now you remarried in 2010 and you had your second child in 2011? ANSWER: I did, Yes.
2,211	22	QUESTION: What was the experience, in terms of the way in whi ch you were cared for at that stage? ANSWER: To be honest, after all these years I thought it would have been quite a different experience, but once ag ain I was put into my own room, my own bathroom and everything was put into the hazard bags once again. To me it hasn't changed.
2,212	22	QUESTION: You lost some blood at that point and there was a suggestion of giving you a blood transfusion? ANSWER: Yes. I haemorrhaged and lost three pints of blood , and I was told I would need a blood transfusion, at whi ch point I asked was it life-threatening? They said n o, it would just speed up my recovery. I said: "In th at case I am refusing due to, pure and simple, I contracted hepatitis C. I don't know what you're putting into me".
2,213	22	QUESTION: Now in 2012, or thereabouts, you were told that you had grown out of the Von Willebrand disease? ANSWER: Yes. Exactly -- that was a Friday. I was in the 6 hospital with my son, and I refused to take the blo od transfusion. I was told by the doctor leaving that week-end that they would see me on Monday, because I still wasn't strong enough to go home. But all o f a sudden, on Saturday morning, I was fit to go home and I was discharged. Then, it was a year later fr om my usual appointment into haematology , I was told t hat I no longer had to come back. I was discharged because I had grew out of Von Willebrand's.
2,214	22	QUESTION: We can see from a letter, 96005, please. It says t hat you had in the past been labelled as having Von Willebrand's disease: "... but as with the proportion of those patients, with ageing, the Von Willebrand levels have correct ed and as such she no longer has the Von Willebrand's disease." Your statement suggests a degree of scepticism about whether that's correct? ANSWER: Very much so. At this time I did follow it up on ce again. It was [name redacted] that gave me that ne ws. I asked her: "How can I grow out of something that you inherit?" I was told that this has come across now . People with Von Willebrand's can grow out of it. I said: "But Von Willebrand's, we were always told we had a rare type, that our levels went up and down 7 quite often, that it could be normal one minute and be very severe the next minute". I was told once agai n no, they have checked me over a few months. I was clear of it completely, so I was just to be treated like any other normal woman. That letter that you are applying to was to a gynaecologist, because I need a hysterectomy, and he had told me that I had a 50/ 50 chance of dying on the table because of all my heal th problems, and he does not write off that I have Von Willebrand's disease, let alone hepatitis C.
2,215	22	QUESTION: Indeed, although you were told that you had cleared the hepatitis C virus some years ago, you received more recently, in 2013, a call from your GP about i t. What can you recall about that? ANSWER: I had a blood test done. My GP rang me up and sa id "[Name redacted] ..." -- Sorry.
2,216	22	QUESTION: We can redact that, don't worry. Sir, if we could stop the live transmission for a moment, because there's a delay. ANSWER: I apologise.
2,217	22	QUESTION: It's all right. Don't worry. The transmission has stopped. ANSWER: It is quite hard not to say your name sometimes.
2,218	22	QUESTION: I can imagine. You are doing very well. We will 8 start it again in a moment and pick it up from wher e we are now. ANSWER: I don't think I am going to have any fingers left in here.
2,219	22	QUESTION: So you were telling us, without mentioning names, about your GP? ANSWER: I got a phone call from my GP asking if I could c ome in to see them. I asked what was wrong. They said they had received bloods back saying I had come up positive for hepatitis C. At that point I responde d: "I know I have got hepatitis C but I'm cleared", an d he went "No, it's showing up here".
2,220	22	QUESTION: And is that something that has been resolved furthe r with your GP or with anybody else, or are you still left in a state of uncertainty? ANSWER: My GP followed out more blood tests and said that it is now showing up. It is not active.
2,221	22	QUESTION: Your statement talks about the stigma associated wi th hepatitis C, and you have used descriptions such as feeling like an outsider, an outcast, a leper, and I wondered if you could tell us in your own words h ow it is that the diagnosis has made you feel over the years? ANSWER: Well, whenever I was diagnosed I was 21 and just newly married, thought I had a whole life ahead of me. 9 I had a fantastic job with great prospects in it. I had a very well paid job, I really enjoyed doing, and just basically looking forward to a fantastic life, and to have that life taken away from you for no reason whatsoever, and especially from no fault of your own, it's very daunting, and having to live wi th something that you didn't cause but be treated like it was your fault, and have people look at you like you're basically something out of a jungle book, an d going to the dentist and being kept to the last and going into the rooms covered in plastic, and you ar e sitting down there and they are asking for the haza rd box to put the stuff into, and drill covers, everything just being covered in plastic, it is so degrading, and very soul destroying.
2,222	22	QUESTION: You have received some support in terms of financia l assistance from the Skipton Fund. You have said in your statement you received a payment. There was t he standard payment that was offered, but that you had to drop a case, a legal case that you had been pursuin g privately? ANSWER: Yes. I took out a private case which my mother an d father were going to pay, and I had started it whenever I was pregnant, and then my medical notes had been sent for, and one of my appointments with 0 Dr Mayne commented to me that she had received a letter to get my medical notes, and her answer to me was: "You would be better spending your money on getting hypnotised to have an easy birth, because t his is something you are never going to win". Then to get the money from the Skipton Fund I had to sign t o say I would withdraw my own private case to accept the money from it.
2,223	22	QUESTION: I should just say, Dr Mayne has said in her respons e to your statement she does recall mentioning hypnot ism to you, but her policy was never to discuss litigat ion with patients, so she is puzzled by that observatio n. So you dropped your private case at the point at wh ich you accepted the initial payment from the Skipton Fund? ANSWER: Yes.
2,224	22	QUESTION: You receive a small annual payment for heating from the Skipton Fund, but you didn't find that out directly from the Skipton Fund, as I understand it. How did you find that out? ANSWER: I found that out from the haemophilia magazine.
2,225	22	QUESTION: You say in your statement if you had not seen it in the magazine, you wouldn't have known about it and wouldn't have known to make the application to the Skipton Fund? 1 ANSWER: I would be still none the wiser.
2,226	22	QUESTION: Ms E, those are the questions I have for you, but i s there anything further you'd like to say? ANSWER: Well, at this point I would like to thank Sir Bri an very much for bringing it to Northern Ireland and f or us to have our say, because I feel that we are smal l over here and we are sometimes not taken into accou nt with the rest of the UK. We contracted it the same as everybody else. We were all treated the same as everybody else. But when it comes to the financial side of it, we are treated totally and utterly different. I just want to thank you for bringing i t to us and letting us have our say.
2,227	22	QUESTION: Ms E, I'm just going to ask Ms Gollop, who as you k now represents you, if there's anything further. Yes. Just one point of detail about the conversation you related in the corridor with Dr Mayne -- ANSWER: Yes.
2,228	22	QUESTION: -- in which you were told, you have said, about hav ing hepatitis C. Was anybody else present with you at the time? ANSWER: I am going to be honest and say I was going to st aple her mouth closed this whole time, but yes, my mothe r was with me.2
2,229	23	QUESTION: And you are here with your brother, also Malachy, t o tell us about the experiences your father went thro ugh and how that impacted upon the family as a whole? ANSWER: Yes.
2,230	23	QUESTION: Now you very helpfully provided to the Inquiry a co py of a report from Dr Mayne dated 6th November 1989, which provides us with a lot of information about y our father, and I am going to ask for that to be put on screen. It is 2658002. If we go to the next page, please, Paul. Thank you. So we are going to look at various parts of this report to help us understand what happened to your father and to trace through t he history of the treatment he received. Okay? ANSWER: Okay. Yes.
2,231	23	QUESTION: So your father had severe haemophilia? ANSWER: Yes, that's right, severe haemophilia
2,232	23	QUESTION: He developed a number of what Dr Mayne here describ es as both common and rare complications of haemophili a? ANSWER: Yes.
2,233	23	QUESTION: Before we look at some of the details, Brigid, can you recall growing up how your father's haemophilia affected him? ANSWER: Yes. Well, it was due mainly to a later diagnosi s. He wasn't diagnosed with haemophilia until he was 2 1. So by that stage, you know, he had severe disabilit ies from that, in that his knee joints were completely affected by that, and he couldn't bend. He had ver y little mobility in that way. So that would have affected his quality of life, you know, in simple things like trying to put your shoes on that would have affected. But as far as we were concerned, he managed the best he could with that and got on with life the best he could with managing his condition, even though you obviously can tell from the report that he had a lot of challenges there. I mean, as well as the severe haemophilia, he also had complications, like the pseudotumour, which I belie ve only about 2% of people suffer from. But in all he showed quite a bit of resilience in overcoming all those complications.
2,234	23	QUESTION: We will keep this up on screen. I will ask you to look at bits of it from time to time, but just deal ing with a few of the basic facts about your father's diagnosis and treatment, as you have said, he was diagnosed when he was about 21 years old in 1956. Is that right? ANSWER: Yes, yes.
2,235	23	QUESTION: We can see from the report, it is the next page, th at he was treated initially in the 1950s with fresh frozen plasma. If we look down that page, over the page to 1957, we see he continued to receive fresh frozen plasma, and we get a flavour of some of the treatments and hospital admissions he endured. He has an admission there that lasted some 22 days after severe reactions to the infusion of fresh fro zen plasma, following the extraction of teeth. ANSWER: Yes, yes.
2,236	23	QUESTION: Then, if we turn over the page, please, Paul, to 19 65 and 1966, we can see there, if you go to 1966, we c an see your father being admitted to hospital again in October 1966 for traumatic haemorrhaging to his rig ht thigh from being kicked by a cow, as recorded there . I think your father was a farmer? ANSWER: Yes, he was a farmer initially. Then, as time we nt on, he set up his own business, a farm machinery business, and that's what he worked at until he pas sed away.
2,237	23	QUESTION: We can see there that he was treated on this occasi on with intravenous cryoprecipitate? ANSWER: Yes.
2,238	23	QUESTION: If we go down to 1967, please, we can see in 1967 h e was admitted to hospital again and required cryoprecipitate. If we go over the page, please, Paul, to 1971, we can see again him being admitted to hospital with a change of symptoms, and your father developed reactions to cryoprecipitate at that poin t? ANSWER: Yes.
2,239	23	QUESTION: You have made reference to the pseudotumour which y our father developed. As you have said, that was an extremely rare complication of haemophilia? ANSWER: Yes.
2,240	23	QUESTION: Swelling of the muscle or bone, which caused him enormous pain and discomfort over his life? ANSWER: Yes, and he had quite a long hospital admission a t one point for that, in 1983, where he would have receiv ed a lot of Factor. They have classed it as what was life-threatening for him in this. Yet again he managed to -- he was told at that time that he wouldn't walk again, but he managed to prove Dr May ne wrong on that. He seemed to like to do that. He arrived for one of his hospital appointments in his wheelchair, I believe, but got up and walked down t he corridor. So that was the spirit of the man.
2,241	23	QUESTION: If we go down to 1974, which should be a couple of pages further on, we can see there that your father was admitted in September 1974 for the planned extraction of nine teeth. At this stage he is described as being given a test dose of a new freez e dried Factor VIII concentrate called Kryobulin. As far as this report shows, that was the first occasi on on which your father was given Factor VIII products ? ANSWER: Yes.
2,242	23	QUESTION: And then we can see further on in that section, in that paragraph, that his treatment was changed to regular Kryobulin, and he and your mother were trai ned in the techniques necessary for administering that at home, and he was issued with material to be kept at home? ANSWER: Yes.
2,243	23	QUESTION: Do you recall your mother assisting your father wit h the Factor VIII products at home? ANSWER: Yes. He would have been deemed to be very lucky at that stage in that he was deemed to be a suitable candidate for home treatment. He lived an hour awa y from the Royal, so that must have been quite a majo r change, you know, to his quality of life and that. I do recall him administering his Factor at our table at home. Yes, I remember him doing that.
2,244	23	QUESTION: In 1979, your father was involved in a car accident and suffered serious injuries. What can you recall about that? ANSWER: Well, I was only 6 at the time, but I just recall that he was in the hospital for a long -- for quite a period of time. When he came home, he was in a wheelchair and his leg in plaster, because he had broken his leg in that accident. It was quite a serious accident. I believe, just from this repo rt, because, you know, I would have been too young, the fact that my mum had administered the Factor at the time was lifesaving for him.
2,245	23	QUESTION: Yes. We can see from the entry in 1979, it records your father being admitted on 13th October, followi ng a severe car accident. Your mother had administere d appropriate Factor VIII treatment within a very sho rt time of the accident occurring. He had multiple injuries. ANSWER: Yes.
2,246	23	QUESTION: We can see your father's admission was lengthy. He was treated with Factor VIII on a regular basis. I t increased until 17th November, in terms of the dosa ge. ANSWER: Yes.
2,247	23	QUESTION: But he was discharged, and we can see Dr Mayne here regarding that despite his horrendous injuries he w as able to walk again. ANSWER: Yes.
2,248	23	QUESTION: Then, if we go over the page to 1983, we can see th ere that having continued on the Home Treatment Program me in relation to Factor VIII, there was a further hospital admission in 1983, with a further injectio n of Factor VIII? ANSWER: Yes.
2,249	23	QUESTION: And then a prolonged admission in relation to the pseudotumour? ANSWER: Yes.
2,250	23	QUESTION: Now, if we just turn on in this report. Paul, it i s page 14 if you look at the page numbers in the very top right-hand corner, please. We can just see her e a description of the treatments that your father received in terms of the particular factor products . So we have seen already reference to him receiving Kryobulin. Then we are told by Dr Mayne in this report, towards the bottom of the page, that in 197 9, because of shortages of Kryobulin, he was treated w ith a different commercial factor product, Hemofil? ANSWER: Yes.
2,251	23	QUESTION: She described unforeseen difficulties in the supply continuing. Then we can see the bottom of that pag e, and over the next page, he was then treated with a third commercial product called Factorate, produc ed by Armour, in the course of 1983. ANSWER: Yes.
2,252	23	QUESTION: If we look at the circumstances of your father's hospital admission in 1983, just further down that same page, we can see there an admission of your father to hospital in October 1983, a range of symptoms being described by your father, his pseudotumour having increased in size and reached t he size of a full term pregnancy, having become infect ed, and extensive internal haemorrhage. He is recorded as having been treated with continuous intravenous antibiotics and regular Factor VIII infusions. We can see at the very bottom of this page: "During this admission", so this is the latter part of 1983, "consideration was given to the possibility that Mr Devlin might have developed the AIDS syndrome." Then it is said: "But, on clinical examination, there was nothing to support that supposition." Now, in terms of your father discovering at some point in the mid 1980s that he had been infected fr om Factor VIII products, I am going to ask you to look back at page 11 of this report. It is the next pag e, please, Paul. Thank you. If we look down the bottom of that page, under the heading "December 1984", Brigid, and I know you hav e read this report, so I hope none of this will be a surprise to you. You will see there being descri bed plans being made in December 1984 to interview all the patients attending the Northern Ireland Haemophilia Centre to have frank discussions regarding the possibilities of becoming infected or already being0 infected by the AIDS virus. We can see at the very bottom of that page a description of actual testing of samples commencing on 2nd January 1985, and the results bei ng kept in a confidential notebook in a locked filing cabinet. That's over the page, the top of the following page. I am going to ask -- we will come back to this document, but I am going to ask for another documen t to be put on the screen first. It is 2658009, plea se, Paul. So we can see this is a letter. It is dated 25th March 1985, and it is an invitation from Dr Ma yne to your father to come to the centre for a blood te st on 19th April. She has explained in the body of th at letter that it is to test in relation to AIDS. Can you see that? ANSWER: Yes, yes.
2,253	23	QUESTION: Then if we please have up on screen, please, Paul, 2658008. This is a letter dated 6 August 1985 from Dr Mayne to your father's GP. We can see from this that the test must have taken place, and what's sai d there is this: "The problem of testing for response to the AIDS virus is well-known throughout the media, and my policy has been to ask each patient when they are 1 being tested if each individual wishes to know the result or not. At the meeting, Malachy himself declared that he did not wish to know the result, therefore I have respected his wishes and have not informed him." Then there was a reference to writing to your mother, Mrs Devlin, to come at the next visit for h er own test? ANSWER: Yes.
2,254	23	QUESTION: Now, these are records that you have only seen very recently. Is that right? ANSWER: Yes. Well, some of these notes have only just be en released on Friday evening. So I have just seen th is for the first time today.
2,255	23	QUESTION: Then, last in this series of correspondence, if we could have up on screen, please, Paul, 26580003. J ust go to the next page, which is the letter. If we co uld just highlight that, please. 17 October 1985. So this is about a month after the letter that was sen t to both your parents about your mother's test resul ts and it says this: "Dear Malachy, "You will be glad to know that you became positive some time between February 1983 and October 1983. We 3 have no sample between those two dates but I imagin e that you became positive some time during the summe r of 1983. Therefore you have more than passed the two-year point. I hope this information is of some help to you." Now, in your statement, Brigid, and at that point you had not seen any of the earlier letters, as you say, they have only very recently been provided to you by the trust, but in your statement you made some observations about that letter there. What was you r thought on seeing that letter? ANSWER: Well, I mean, it is bizarre to think that anybody is going to be glad to know that they became HIV posit ive in February 1983. I don't know the context, you kn ow, in which the letter was sent, but my dad would have been a patient of hers for many years at that stage . It just seems -- you know, it seems crazy to have communicated something like that in a letter in the first place, but, as I say, I don't know the contex t really behind that. I mean, it all seems quite confusing as well, that he's been sent a letter in 1985, yet the family doctors were also sent a lette r to say that he didn't want to know about being positive. So it's just -- it's quite unclear to me . As you say, these have only just become available 4 today, this morning. I have just seen these.
2,256	23	QUESTION: In your witness statement you express both a degree of concern about the use of the phrase "you will be gl ad" but also about this method of disclosing informatio n about the diagnosis, and you also weren't clear as to when the diagnosis was first known and whether ther e had been some delay in informing your father. Is t hat right? Those were your concerns at the time? ANSWER: Yes, but just reading some of that synopsis that you have just had up on the screen there, it does say t hat he was clinically examined for the AIDS syndrome in 1983. So it's just -- I mean, it is not for me to say, but it is just unclear, you know, why you clinically examine someone, obviously it was known that it was a risk. There's also a comment about, you know, the results were kept in a filing cabinet, fo r those that didn't wish to know. So my question is those people were people infected but sent off home with a deadly virus to put families at risk, to put everyone at risk, and not being given the proper information or -- I don't know. It is just all qui te unclear as to what was happening.
2,257	23	QUESTION: And in view of what you have said in your witness statement, and that letter from 17th October 1985, those concerns were notified to Dr Mayne, and you h ave 5 seen Dr Mayne's response now, this morning. I wond er if we can just have that up on screen, please. It is 736001, but it's paragraph 4 of that statement, please, section 4. Whilst we are getting that up o n screen, Brigid, what you have seen Dr Mayne relate in that statement is that she did, in fact, communicat e the diagnosis to your father in person on a home visit? ANSWER: Yes. I'm not aware of any of that, but even with that type of communication and that language to think anyone would be glad to have a HIV virus just seems inappropriate to me.
2,258	23	QUESTION: I think in fairness to Dr Mayne, whilst we are wait ing for it to come up on screen, I will just read out t he passage of her statement that deals with this. It says: "I recall that Mr Devlin was unable to attend the hospital in 1985 to receive his results. So I told him I could travel to him." She gives an explanation of trying to find the house: "We sat down and I told him the very unwelcome news. I recall his disbelief and him asking me if I could find out when exactly he was infected. I explained that I would try to find out and that 6 anyway one confirmatory sample was needed to confirm/deny the result. I recall him saying that he would be glad if I could find out and let him know. I asked Mr Devlin to come up to Belfast for the results, but he maintained repeatedly that he would be glad to have a letter. I recall that he asked me t o leave as I would be drawing attention with my car, hospital badge and 'Doctor on Call' notice. I hope this explains the letter and the seemingly appallin g use of the word 'glad'." That's what Dr Mayne has said in response to the concerns you have expressed in your statement. ANSWER: That's fair enough. She has given her account of it all, and perhaps she sent the letter in good faith as he asked. But I still think, you know, the languag e used in it is inappropriate for what she is talking about.
2,259	23	QUESTION: Just for the record, I don't need you to look at th e test result documents and put them on screen, but there is material in Dr Mayne's report which record s that the last negative sample, as subsequently test ed of your father's blood was 4th February, 1983. The first positive sample was 10th January 1984, and on that basis she sets out in the report that we were looking at before her opinion that your father's 7 seroconverted in the course of 1983. ANSWER: Yes.
2,260	23	QUESTION: Now do you have any recollection yourself, leaving aside what's in any of these records or reports or anything you have recently seen from them, do you h ave any recollection yourself of any conversations at h ome about this or how you found out that your father wa s infected with HIV? ANSWER: Well, my mum did tell me about it. I can't recal l exactly when, but, you know, as far as I remember i t would have been within a year before -- before he died. It wasn't any longer than that. So, you kno w, just now, you know, seeing all this information is really upsetting. You know, if he did know in 1985 , I was 12. To think that that was going on in the background in our home, which we were obviously protected from and not aware of ... I was told abo ut it around -- I would say around about a year before he died.
2,261	23	QUESTION: You have also recorded in your statement that you a re aware that your father was diagnosed at some point with hepatitis C and hepatitis B? ANSWER: Yes.
2,262	23	QUESTION: But you don't I think know anything about the timin g or the circumstances of those diagnoses.8 ANSWER: The hepatitis C we only became aware of because Dr Benson had contacted us a few years back, probab ly about seven or eight years ago, that there was a Skipton Fund available, and that my mum was eligible, you know, to apply for that, for compensation payment from that. So it was only at that stage that I knew that he had also had hepatit is C.
2,263	23	QUESTION: If we just have up on screen one more document in relation to that, please. It is 2658005. We can s ee this is a letter of 25th October 1990. This is written very shortly after your father's death, fro m Dr Mayne to your family GP, your father's GP, and w e can see in the last sentence it says: "Investigation indicated that he was hepatitis C positive ..." But as far as you are concerned that is something you only discovered, is it, many years after his death? ANSWER: Yes. Again, I don't know whether he knew that or my mum knew that. We wouldn't have been included in t hat communication, but that's as far as ourselves are concerned, we only knew about that a few years back , as I said.
2,264	23	QUESTION: Before we talk about the circumstances in which you r 9 father became more unwell and died, can I just ask you a little about your father's character and personality? You have made reference to his determination and perseverance in your witness statement? ANSWER: Yes.
2,265	23	QUESTION: What can you tell us about him? ANSWER: Well, I think, as I say, you know, despite the se vere disabilities that he had from his condition that, y ou know, both him and my mum were hard workers. He se t up his own business and was very successful with th at. You know, as far as I am concerned, he got on with life and I presume himself, you know, had a lot of difficulties that I wouldn't have been aware of, an d a lot of challenges. He had a great love of sport and particularly Gaelic football. I mean, anyone that will ask -- you mention my dad's name to anyone, it is the first thing they will think of. He attended ev ery football match there was going. There was a lot of our childhood spent travelling to different footbal l matches. So, you know, he obviously showed great resilience and courage with his condition. We woul d have spent -- we would have been familiar enough wi th the Royal and Ward 22, with different admissions an d visiting, but all in all he did get on with life an d 0 things, you know, as any other family. We would ha ve gone on summer holidays every year. So yes, I thin k he coped admirably with his condition.
2,266	23	QUESTION: Dr Mayne described your father in her statement in this way: "Mr Devlin was one of the most disabled and severe haemophilia patients that attended the centre. He was one of the most courageous, long-suffering and resilient of patients. He was also at times more t han a little stubborn. He was in receipt of my undying admiration." And the report that we looked at earlier, written by Dr Mayne in 1989 talked about him learning to wa lk or walking again, despite medical views to the contrary, and talked about his amazing resilience. ANSWER: Yes.
2,267	23	QUESTION: And that's the father you remember? ANSWER: Yes, yes. You know, it's a great compliment to h im that despite such difficulties and challenges with it all that he did try and get on with things, and he would have really enjoyed proving Dr Mayne wrong. He wouldn't have been the easiest patient, I imagine.
2,268	23	QUESTION: You have told us how you were informed of your father's illness by your mother. It was about the time you were studying for your 'A' levels. Is tha t 1 right? ANSWER: Yes, yes.
2,269	23	QUESTION: Your mother passed on some advice to you, to take c are not to share a glass that your dad had drank from, and not to ask him for a drink from his bottle of orang e if you were out in the car. ANSWER: Yes. I mean, I'm trying to recall events from, y ou know, over 30 years ago, but I do recall my mother telling me and I do recall that that was part of th e conversation. I am not sure whether -- I think the y did know that it perhaps couldn't be transmitted th at way, but there was obviously a great paranoia about it, you know, to be as protective as possible. I mean, I don't know how he felt about it. Perhaps I had been asking for drinks and that was upsetting him. I don't know. Then my mum told me not to do that, not to put him in that position.
2,270	23	QUESTION: Your father became unwell, more unwell, in the cour se of 1990. You helped your mum caring for him at hom e for a while? ANSWER: Yes.
2,271	23	QUESTION: What, if anything, can you recall about how he was at that time? ANSWER: Well, I remember that would have been around Sept ember time. I do recall they did go on a summer holiday 2 somewhere that year as well. He got very sick very quickly. I recall him, you know, being at home in bed. He had really bad diarrhoea, and I do recall that he was coughing up like lumps of blood at one point, because I did help my mum with trying to mov e him in the bed. He was very unwell at that stage, and I think resisting having to be admitted to hospital , but that's what happened in the end. He went to th e Royal in an ambulance, and we went with him.
2,272	23	QUESTION: And your father was in hospital for about a month until he died? ANSWER: Yes.
2,273	23	QUESTION: And you described in your statement how on the occasion of this hospital admission he was in a separate room and nurses put on gloves and aprons when entering the room. You describe that as being different from previous hospital visits? ANSWER: Yes, that's right, yes, because he was -- Yes. He was in a room of his own, and that's just something different from, you know, previous times.
2,274	23	QUESTION: Your father died on 17th October 1990 in hospital? ANSWER: Yes, that's right.
2,275	23	QUESTION: And you have exhibited to your witness statement hi s death certificate. I am just going to ask for that to be put up on screen. It is 2658004. We can see in 3 the middle of that the cause of death was given. W e can see from that septicaemia, chest infection, haemophiliac pseudotumour. No reference there to H IV or AIDS? ANSWER: No, no reference at all. You know, there is no reference to double pneumonia was what we were told at the time that that is what he actually had at the e nd.
2,276	23	QUESTION: Your witness statement describes the funeral arrangements and how they were different from what would have been the tradition. Can you tell us abo ut that, if you are able? ANSWER: Yes. I mean, what would be the normal catholic tradition is that you have an open coffin, you know , where the body is displayed for a wake. So that wo uld have been my mother's wishes, that my dad's wake wo uld have been as you would expect, but it had to be different from that. The undertaker was contacted about a week before he died to inform him that he h ad AIDS and had HIV, and was dying of AIDS, and they expected him to die within the next couple of weeks . He was put under -- he describes it as under quite a bit of pressure to lay the body out as expected, or there was mention of cremation, and that wouldn't h ave been my mum or dad's wishes. So they came to an arrangement in the end. The undertaker quite 4 vividly described how he received my dad's body in what he called a disaster bag from the Royal, and w as under a lot of stress to make sure that he dealt wi th that appropriately as arranged. So the arrangement was that the coffin was allowed to be open for one night, with strict restrictions, in that his hands were covered and there was like a net across his fa ce which was obviously very different from any other w ake that anyone would be to.
2,277	23	QUESTION: Can I ask you a little about the impact of your father's death on the family? First of all, the impact on your mother? ANSWER: Yes. Well, you know, my father's death was life-changing for the family. It left a huge gap i n the family for every future event, Christmas, birthdays, graduation or marriages. You know, the grandkids that he never got to meet. But yes, my mother was most affected by it. You know, this is as much for her today too, because she was in a very, very difficult and vulnerable position. She had lo st her husband, her life partner, and since that my mu m passed away four years ago, so she spent that 25 ye ars alone. So it was just a really turbulent time of uncertainty, because she was left with an overwhelm ing responsibility. She was left with, you know, 5 obviously two teenage kids, who were only 14 and 17 . There was the business. There was a farm of land a nd she was left on her own with all of that. I mean, she obviously also had the burden of the secrecy of it all, of the stigma that was attached to it. There was nothing -- it was all very swept under the carpet. There wasn't -- still to this day I don't know who was told, you know, or if people know what my dad died of. She also had to go through the trauma of having to be tested for HIV herself, and, you know, she struggle d. She struggled with that, and she found it difficult -- she found it difficult to cope. You know, she real ly struggled. It affected her greatly. I don't want to go into much more detail on that, but it was very difficult, very difficult for both of us, and it wo uld have affected, you know, relationships with her as well. It affected her personality, her behaviour, her mental health. She became almost reclusive, in tha t she liked to stay at home and do her own thing. Sh e didn't socialise as much anymore. I don't recall h er having much support in that way. You know, she was left with difficult decisions to make on her own, I expect, and it is sad that, you know, she was lef t in that position, yes.
2,278	23	QUESTION: You have described how she tried to keep the farm 6 machinery business going? ANSWER: Yes.
2,279	23	QUESTION: But she was not able to do so, and she had to sell it? ANSWER: Yes.
2,280	23	QUESTION: She had to sell the house and the farm and move int o a smaller house that your father had been in the process of renovating? ANSWER: Yes.
2,281	23	QUESTION: You put it this way: "She lived life as a widow." ANSWER: She did, yes.
2,282	23	QUESTION: Then, Brigid, the impact upon you, you said in your statement you adored your dad. You were very much a daddy's girl. You were 17 when he died. Your brother I think was 14? ANSWER: Yes, yes.
2,283	23	QUESTION: Your statement records how you felt your father's absence from your 18th birthday, eight months after he died, and all the important milestones in your life that followed? ANSWER: Yes, yes.
2,284	23	QUESTION: And in particular you have identified as one of tho se milestones when you got married, it was your brothe r who gave you away rather than your father, because your father wasn't there? 7 ANSWER: Yes, that's right, yes.
2,285	23	QUESTION: Did your father, as far as you know, receive any counselling or emotional, psychological or other support in the years between his diagnosis in 1985 and his death in 1990? ANSWER: Well, I mean, not that I'm aware of. I didn't kn ow that even that he had HIV until around 1989 or so. So I have no idea what support, if any, him and my mum received.
2,286	23	QUESTION: In terms of you and your brother, did either of you receive any kind of support, emotional support, counselling, therapy of any kind? ANSWER: No. No, we didn't receive anything.
2,287	23	QUESTION: Your brother has given a witness statement to the inquiry as well. He has described the lack of supp ort for bereaved children as being forgotten about on an emotional level. The children are left to a lif e of pain and emotional problems. Do you think that' s a fair description of how you two feel you were lef t? ANSWER: I think so, Yes. I mean, it was very difficult, y ou know, the fact that your parent has died, but the circumstances of it, you know, having the whole secrecy of everything. I mean, I have a family relative recently who described it all as "a great mystery". You know, people were maybe guessing 8 things, but it wasn't really being said out loud. So yes, those things all made it more difficult.
2,288	23	QUESTION: You overheard a conversation once between your moth er and your aunt, working out that they would tell peo ple that your father died of cancer. Is that right or is that incorrect? My understanding might be wrong. ANSWER: No, I am not sure about that.
2,289	23	QUESTION: Can I then just ask you one further thing arising f rom what you have set out in your statement? That's in relation to your own child, who has haemophilia. Y ou described in your statement that his care is of exceptionally good quality, that you feel very supported? ANSWER: Yes.
2,290	23	QUESTION: But you are left with a residual fear because of wh at your father went through. Can you explain that? ANSWER: Well, I don't have any fear that there's any issu e with the treatment he gets with his recombinant factor, but it's just a chilling thought that, you know, that that ever was the case, that the treatme nt you were given was doing anything other than replac ing the missing factor. As I say, you know, there's exemplary care from the Haemophilia Centre here. There is an exceptional team of people there, but y ou would just want to be certain that there was never 9 going to be anything that would go wrong that would compromise the care of your child.
2,291	23	QUESTION: Before I ask Mr Williams, who represents you, if th ere is anything further he thinks should be asked, is there anything you would like to add, Brigid? ANSWER: Yes. I just have a little bit I have written out. It was just to say this was a big decision. It is extremely difficult, you know, sharing personal information in public, and the profound effect my father's death had on our family. The medical repo rt refers to my father's amazing resilience and it is therefore heart breaking that the treatment he depended on exposed him to known and fatal risk. M y dad's death was preventable. We owe it to him toda y and to my mum and to our family to ensure that his life counts.
2,292	23	QUESTION: Thank you. I am just going to ask Mr Williams if there's anything further. There's just one further matter, Brigid, which is just to ask you about how it was that your father's medical records did become available in the last fe w days? ANSWER: I had a phone conversation with Dr Benson and jus t discovered that my dad's notes were still there. S o he very promptly acted on that and got the notes 0 released as efficiently as he could. I believe he got that done within a day or so, that they arrived wit h you on Friday afternoon.
2,293	23	QUESTION: So it is through the discussions you had with Dr Benson -- ANSWER: Yes.
2,294	23	QUESTION: -- that notes that you had previously asked for but not been given -- ANSWER: Yes.
2,295	23	QUESTION: -- became available in the last few days? ANSWER: Yes, and it is thanks to Dr Benson that he's got those released for us here today.
2,296	24	QUESTION: How often did you need treatment for it? ANSWER: As a young child not too often, because I was classified as a mild, but my blood assays changed a s I got older to be classified as a moderate then.
2,297	24	QUESTION: And how old were you when you started to use Factor VIII? ANSWER: From my memory, around 10 or 11 years of age.
2,298	24	QUESTION: So that was about 1978? ANSWER: Yes.
2,299	24	QUESTION: When your treatment changed over to Factor VIII, we re you or your parents given any warning about any ris ks involved in that change? ANSWER: No.

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