Unnamed: 0
int64
0
47k
index
int64
0
357
q_a
stringlengths
22
51.4k
200
2
QUESTION: And the financial impact, and I'll come back to financial impact in a few minutes, perhaps, but the financial impact can take a further toll in terms of insecurity, a risk of losing the house and the like. That threat of financial insecurity will no doubt exacerbate the other social and psychologica...
201
2
QUESTION: Could we just put up onscreen, there's just one passage from your report I want to read out, if you put it up onscreen, others can follow it. The report is EXPG0000003, please. If we go to page 19, please. Henry, it will probably actually come up as page 20 on yours. It's 19 on the one before. If ...
202
2
QUESTION: You recommended in your report the possibility of obtaining a health economist's input. ANSWER: Yeah.
203
2
QUESTION: I should say that is a matter on which Sir Brian invites core participants to make submissions as to what issues could or should be addressed by health economists. But could I ask you from your professional perspective to identify any particular issues or analyses that you think a health economist m...
204
2
QUESTION: Can I turn, before the break, to two other aspects of social impact. The first is the impact upon some of the most intimate aspects of private and family life. Again, you've identified in the report gleaned from the witness testimony that the inquiry has received, decisions partners are having to t...
205
2
QUESTION: Yes, I will come back to complicated grief, certainly. You've already alluded to it and touched upon it in your report but all of these issues you've been discussing can take their toll on marital relationships, partnerships in particular, and you've picked up in your report on some matters that may...
206
2
QUESTION: The final question I wanted to ask before we break for the morning break, is again, looking at impacts upon family life. Many statements describe, and you've picked this up in the report, the limitations upon the ability of the person who is ill within the family to participate in ordinary family ac...
207
2
QUESTION: Picking up I think on an observation you made, Dr Thomas, engendering for some 45 individuals a sense of grief for a family life lost. ANSWER: Absolutely. And, you know, seeing yourself as an incompetent -- I think all of us like to feel in some ways that we're -- some roles that we're good a...
208
2
QUESTION: One of the most devastating impacts described to this Inquiry and captured in your report is the death of a child, and I wanted to ask a little about that and bereavement and loss more generally, and to do so first of all by reference to one of the papers that you've referred to in your report. Henr...
209
2
QUESTION: And if we just turn to the next page of this report, the observations you've made, Professor Weinman, would bear on many of the accounts that we've heard, not simply about the death of a child, but about the deaths of partners as well. ANSWER: Absolutely, yes.
210
2
QUESTION: Then there's some specific observations here about some particular additional components in relation to the parental loss of a child. And so I'll just pick it up in the first paragraph, four lines down: "At various stages in the life-cycle, men and women relate to child-conceiving and child-rearing...
211
2
QUESTION: And then it continues: "Within the bonds formed within the family, 54 the parent-child bond is not only particularly strong, it is also integral to the identity of many parents and children." Then the next paragraph says: "The parents of children and adolescents who die are found to suffer a broad r...
212
2
QUESTION: One of the other features you've alighted upon in your report in relation to the death of a child is in the context of those parents who were administering blood products to their haemophiliac children, the additional component of guilt, the guilt of "I have killed my child." In your report, at page...
213
2
QUESTION: Thank you. I'm going to come on to stigma next, but before I do so I just wanted to ask Ms Edwards 60 just to tell us a little about the Haemophilia and HIV life history project in which you were involved. ANSWER: So the Haemophilia and HIV life history project is an oral history project. Maybe...
214
2
QUESTION: Yes, please. ANSWER: So an oral history project is the concept that you would record history by interviewing people who experienced that history. And often history is written by bureaucrats, politicians, historians, academics, but an oral history project would be a collection of memories, testimo...
215
2
QUESTION: Yes. 64 ANSWER: For example I interviewed somebody who had never ever spoken to a single person about his HIV infection. He was infected as a young man. He actually hadn't told his mother, and he hadn't told his sister, who he was actually very, very close to. But he never told them. The only ...
216
2
QUESTION: I think it's right that there are a handful of the interviews that are not public in accordance with the wishes of those who gave the interviews. ANSWER: Yes.
217
2
QUESTION: I should also say that the British Library has provided to the Inquiry all the materials that it can provide, and they are 66 materials that have been read and listened to by the Inquiry, and members of the Inquiry team. ANSWER: And I believe you have also got the closed interviews.
218
2
QUESTION: We do, yes. ANSWER: Which is very, very, very unusual to have access to an oral history interview that has been closed.
219
2
QUESTION: That, I think, leads very naturally to the next theme I wanted to ask you about, which is the theme of stigma and discrimination. In your report, you say this, on page 20: "The impacts of medical conditions for individuals and families are profoundly affected by whether they are imbued by a stigma." ...
220
2
QUESTION: One of the consequences of stigma may be that individuals do not wish to disclose their condition, and many witnesses reported that, either contemporaneously or still today. ANSWER: (Witness nodded)
221
2
QUESTION: They didn't want to disclose their condition. That leads to two further concepts I wanted to ask you about and perhaps I can do this by reference to one of the papers in the bundle. Henry it's EXPG0000006, please. It's a paper by Beales and others. If you go to the next page please, sorry the next ...
222
2
QUESTION: We certainly heard from witnesses who have given evidence anonymously because they still have not disclosed information about their health to those who know them, and from witnesses whose close relatives still do not know that they are, for example, HIV positive. And they talked to the Inquiry how th...
223
2
QUESTION: Dr Thomas? ANSWER: Just picking up on that point around psychological support, and for me coming out of the documents that I've read was the lack of support that was offered. People, some people did get good support, and it was variable across the country, but another barrier to people accessing...
224
2
QUESTION: We're going to look at a couple of HIV and then hepatitis C-specific materials in relation to some of the particular aspects of stigma associated with those conditions, but just picking up on what you've said about Birchgrove, could we have up on screen, please, Henry, HSOC0005046. So this a report, ...
225
2
QUESTION: In your report at page 20, you've observed that the campaigns contributed to widespread public fear, and to the popular notion that HIV/AIDS could be caught through normal social interaction. Now, you've observed in your report from the 83 statements and the evidence that the Inquiry has heard, nu...
226
2
QUESTION: Yes, Professor Morgan? ANSWER: I'd say that in some cases we find that sort of media celebrities can be very important in actually challenging the stigma. And if you think about it, the late Princess Diana actually shaking hands with somebody with AIDS, I mean that seemed to be more important to ...
227
2
QUESTION: Professor Morgan? ANSWER: I think you've not mentioned one aspect underlying it, which is the blame, and I think a second aspect is fear, and there is still fear, and I think this is something that needs to be addressed because the notion of fear is sort of amplified and once you fear that HIV coul...
228
2
QUESTION: I think we have one additional member of the panel to be sworn in. DAME THERESA MARTEAU (affirmed) Examination of Panel by MS RICHARDS (continued) ANSWER: So we were looking before lunch at the question of stigma for those suffering from HIV. Before we leave the topic of stigma I wanted to look...
229
2
QUESTION: So we were looking before lunch at the question of stigma for those suffering from HIV. Before we leave the topic of stigma I wanted to look at one of the materials you've referred to in your report relating to stigma and hepatitis C. Henry, could we have up, please, onscreen EXPG0000028, please. T...
230
2
QUESTION: And it's very much -- for similar reasons to those you discussed before lunch, it's that question of seeing certain types of behaviour associated with it that are seen as bad by society and then the aspects of fear that you described earlier. ANSWER: Yes, both, as you say, the shame 96 from -- se...
231
2
QUESTION: The way you put it in your report was to say that: "Hepatitis C is a stigmatised condition and shares some characteristics of HIV with its normal route of transmission thorough handling blood, particularly in the context of illicit drug use, linking it with publicly acceptable behaviour." Then you ...
232
2
QUESTION: Witnesses have commented on, and relayed, and you've picked up on this in the report, a number of different ways in which they have experienced stigma, at least felt stigma, if not enacted stigma, within healthcare 98 settings. And I just wanted to explore a little the potential consequences of tha...
233
2
QUESTION: Specifically within the healthcare setting, are there any suggestions that you can make, either now or, if not now, perhaps in the supplemental report that you're kindly undertaking to provide, about how stigma within a healthcare could be addressed? If it was something you would like to think about...
234
2
QUESTION: And then Theresa, you ... ANSWER: I was just going to add to what's already been said, to say that people working in a healthcare system are part of society, and so our prejudices will be revealed through the people working in the health service, so I think it points to two targets for change. On...
235
2
QUESTION: We will in just a moment. Doctor Thomas, was there something you wanted to say? ANSWER: Just to add to what everybody has just said, that communication training is a really important way of helping people, but involving key participants who are, if you like, hepatitis C sufferers, to be part of t...
236
2
QUESTION: And we'll write to you and set that out. You don't need to try to remember it. I want to move to the question of communication which a number of you have alluded to in your answers already. In the report, you say this: "Good quality communication is an essential element of healthcare practice." A...
237
2
QUESTION: Yes, I'm looking at you. ANSWER: Yes, good quality communication is 107 absolutely pivotal to everything that happens within medicine, because if you are a poor communicator, you're probably a poor listener as well, so you don't hear what patients say, you don't actually ask questions in ways th...
238
2
QUESTION: We've obviously heard examples that go back to the 1970s, through the 1980s, to the present day, and from what you say, Dame Lesley, it sounds as though, from your perspective, it is still very much a present day problem. ANSWER: Yes, it is. Although certainly within most of our medical schools the...
239
2
QUESTION: One of the papers you'd referred to, I won't -- don't need to put it up onscreen but if anyone wants to know where to find it, it's EXPG0000016, and it's a paper by Elder 2017, and it talks about empathy and the importance of empathy in the clinician-patient relationship. Again, many of the statement...
240
2
QUESTION: What role does that play in modern medicine and is that something that can be taught or assisted? ANSWER: That's a very interesting question because there are lots of debates that go on about whether or not you can actually teach people to feel, to care, to walk in the same shoes as the person in...
241
2
QUESTION: Dr Thomas? ANSWER: Yes. And the flip side of empathy is compassion, and there's quite a lot of work being done at the moment within the NHS to try to instil more compassionate healthcare professionals, and an important element of that is enabling people to actually have feedback about their skil...
242
2
QUESTION: Do you know, any of you -- Dame Lesley, you may know the answer to this, I hope, but any others who may assist -- to what extent is any of this -- communication skills training, work on compassion and empathy -- part of any of the basic medical training that the medical schools deliver as part of a d...
243
2
QUESTION: Dr Thomas? ANSWER: We're going to talk about that later on, I know, about embedding psychological services, and an important role that psychologists have when they're part of a medical team, you see the doctor, you see the nurse, you see the psychologist, is normalising psychology, but it's also ab...
244
2
QUESTION: I'm going ask about some of the potential psychosocial consequences of poor communication in a number of different respects. Taking, first of all, consent, and I'm not asking about the legal requirements for informed consent, but can you just perhaps assist us with the importance, in psychosocial ter...
245
2
QUESTION: Dame Theresa. 118 ANSWER: If I could just add to that, Lesley has described how this could erode/undermine trust. The other thing that consent does is it provides what we could think of as psychological preparation for a test result, so some of the harrowing evidence that people describe that th...
246
2
QUESTION: Then you've addressed in the report the consequences potentially and the importance of adequate information and accurate information being provided. If insufficient information is provided about whether it's a test result or a condition or treatment or side effects, is it fair to assume that patient...
247
2
QUESTION: Doctor Thomas, was there something you want to say? ANSWER: Just to say that in addition to what Professor Fallowfield has said, is really that if you have got poor information or scant information, then how -- you're not supported to go forward to take on board what are very complex healthcare t...
248
2
QUESTION: You've set out very helpfully in your report good principles or good practice of how to communicate bad news. ANSWER: Yes.
249
2
QUESTION: I'm not going to take time going to that because we've got it in the report, but you've also drawn attention to a particular paper, Bernacki, which we've also got, and some elements of best practice when discussing a 124 diagnosis of serious illness. Can I then come on to about candour, openness, a...
250
2
QUESTION: Yes. ANSWER: I think that -- moving on from what John is saying is that also -- that was the emotional impact but the paper also goes on as well to discuss the behavioural impact, and the behavioural impact where somebody feels that they -- the acknowledgment of error at whatever level is not bein...
251
2
QUESTION: Dame Lesley? ANSWER: I was actually going to say something rather similar. I mean when I did quite a bit of work with what was then called the National 128 Patient Safety Agency, when we were trying to encourage more open disclosure -- in fact the programme ended up being called at the time Bei...
252
2
QUESTION: Just in relation to that guidance being open, which was 2009 guidance, I should say it's guidance that relates now to England, but there is guideline in Wales, Scotland and Northern Ireland, and we will obtain those and provide them to core participants. You talked also about the Australian study an...
253
2
QUESTION: Dame Theresa, was there something you were going to add? ANSWER: I was just going to mention that really in this context, and some of the witness statements emphasised this, that insult was added to injury where sometimes people were encouraged in a hostile way to take blood products and were fal...
254
2
QUESTION: Then can I just ask you a little about -- apologies -- what they mean, who they might need to come from, how they might need to be expressed. First of all, an acceptance of responsibility or some kind of comprehensive apology, if made promptly, is presumably likely to be of greater benefit than if i...
255
2
QUESTION: Your report and your evidence obviously focuses upon apologies, candour within the healthcare setting for obvious reasons. But 134 would the basic principles that you describe, of the importance of there being acceptances of responsibility, candour about mistakes, potentially also apply to Governme...
256
2
QUESTION: Just one further aspect of candour and communication, but a slightly different one. 135 Significant numbers of witnesses to the Inquiry have reported either lost or missing medical records, incomplete records, destroyed records, or they've reported difficulties in accessing records, either their ow...
257
2
QUESTION: I'm going to move on to the -- my penultimate topic is difficulties in accessing treatment, which I can take shortly, and then there's a slightly longer topic in relation to care and support, which is an important one and we'll need some time. So if I may, I'll just trespass into the break for two o...
258
2
QUESTION: I want to ask you now about the question of psychological and social care and support. Starting with psychological support and counselling. First of all, do you consider that the provision of counselling and psychological support would have been of benefit to patients infected with hepatitis and HI...
259
2
QUESTION: And family support, informal support networks, through groups such as a number of the groups that we've heard described, are clearly very, very important, but they are important in their own right rather than as a substitute for psychological and professional assistance? ANSWER: Yes, there's a dif...
260
2
QUESTION: And in the absence of formal psychological support, is there a risk that patients may develop their own coping and adjustment strategies? And that might include strategies that are damaging or harmful. We've had some accounts for example of people turning to alcohol and drugs [all witnesses nod] as...
261
2
QUESTION: Is there still the potential for benefit for patients to access psychological support services now, so many years after some of the initial events? ANSWER: Absolutely.
262
2
QUESTION: One issue that has -- or one concern that's been expressed by a number of people is about the variability amongst different parts of the United Kingdom and the different schemes within the United Kingdom, different elements of both psychological and social support being available, and that's engender...
263
2
QUESTION: A common theme -- I'm sorry, Dr Thomas? ANSWER: Just that where there are psychologists within haemophilia or hepatitis C services, their access is very, very variable as well, so you may have, say -- I can speak for my centre -- you know, psychologists providing three or four days to Haemophilia...
264
2
QUESTION: One of the common concerns expressed by witnesses has been where they've attempted some form of psychological support -- accessing some form of psychological support, it's been at a level of general mental health services, and they have found themselves having to explain the history of infection thro...
265
2
QUESTION: You've referred in the report to UK quality standards for haemophilia and for haemoglobin disorders. Now obviously at the risk of perhaps stating the obvious, that's only going to be available for individuals who are accessing those centres, and because they have either a bleeding disorder or a haem...
266
2
QUESTION: I'm going to have to check. No, I can't even see it on the transcript. I was asking, I think, about the -- people having to go back to the same centre where they had been infected. ANSWER: Yeah, so Haemophilia Centres have actually then provided kind of outreach work, and certainly one recommend...
267
2
QUESTION: Dame Lesley? ANSWER: I wonder if I could slightly disagree in the sense that it for many people, what has happened is they've lost trust and if you're going to re-establish trust you can't actually do that by sending them somewhere else. And also some people live, certainly parts of the devolved...
268
2
QUESTION: Professor Christie? ANSWER: I suppose I wanted to suggest something slightly in the middle because I think I agree absolutely with both positions. As a psychologist, you don't have to have diabetes in order to work with a young person with diabetes. You don't have to have a particular condition...
269
2
QUESTION: Dame Theresa, was there something you want to add? ANSWER: Yes, just to say it's not my area of expertise so I defer to what I'm hearing here, but I'd just like to add that I would want to think about this not just in terms of psychologists, there are other healthcare professionals who can provide...
270
2
QUESTION: Would you also expect psychological care and support to be available to affected individuals, in the sense that the Inquiry has used that term: family members, partners, children, et cetera? ANSWER: We opened this morning by stating very, very clearly that nobody lives on their own with this, tha...
271
2
QUESTION: Dame Theresa? ANSWER: Just to add: infected; affected; and a very important point not to lose sight of that Lesley has already mentioned, the healthcare 162 providers. I think it's absolutely key that any kind of training that we talk about continues through in terms of providing support for tho...
272
2
QUESTION: A number of those that have given evidence about bereavement have pointed to an absence of psychological support for them, either in the weeks or months preceding death or in the weeks, months and years after death. Would that be another important part of any service offered? ANSWER: Yes, and actu...
273
2
QUESTION: Can I ask, if an individual is reluctant to access psychological support -- and there may be all sorts of reasons, many of which you'd discussed why that might be the case -- how active should healthcare professionals be in trying to encourage that individual to access support services? ANSWER: I...
274
2
QUESTION: If we just broaden out the discussion from psychological support to other forms of support more broadly, social support, what other kinds of support might alleviate some of the kinds of psychosocial impacts that you've identified? ANSWER: Decent financial support, yes.
275
2
QUESTION: Dame Theresa, can I ask you now 168 a slightly different topic about the consequences of vCJD notification. Your report very properly draws attention to what I think is the only study that has looked at the psychological or emotional consequences of being told about the possibility of exposure to v...
276
2
QUESTION: Then going back to questions of communication, how does what you told us earlier about good communication inform what should be the right approach to this situation, where you're not telling somebody that they have been diagnosed with a condition; you're telling them that they may have been exposed t...
277
2
QUESTION: Dame Lesley. ANSWER: I'm always very interested in individual differences and how different people respond in ways that you think, you know: this is really strange. Why is one person devastated by the news? Why is another entirely, you know, sort of cool about it? And there's a very interesting ...
278
2
QUESTION: We have heard from one witness whose son died in consequence of vCJD. His son's experience of the care and support that was available, and your report alludes to the specialist provision that was made for people diagnosed with a prion disease, his experience was very different from the experience tha...
279
2
QUESTION: Again this is, as I say, a handful of questions from various core participants and their various legal representatives. One is question for clarification of something Dame Lesley said when we were talking about consent earlier, and you used a phrase "tacit consent", and I wondered if you could expla...
280
2
QUESTION: And that reinforces the importance, perhaps, of two things. One is the provision of full information by the healthcare clinician as to what they are doing, or what they are asking the patient to agree to. And the second is the importance of written consent, of recording that. ANSWER: Yes, absol...
281
2
QUESTION: Then the next question is about care plans for treatment. What are the benefits, the psychological benefits, of having an agreed care plan and of having input into that care plan as an individual? ANSWER: So an important benefit from that is that the care plan is individualised to that patient's...
282
2
QUESTION: The next question is about 181 psychological impact again. And it's this: would you expect there to be an additional adverse psychological impact for someone who has been infected as a result of treatment that wasn't for a life-saving event, but may have been treatment that wasn't essential or e...
283
2
QUESTION: Then again we explored yesterday a number of different psychological and indeed psychiatric impacts arising from illness and treatment and so on. Does the risk of those impacts also include the risk of other harmful behaviours such as addictions or behavioural issues? ANSWER: We certainly heard ...
284
2
QUESTION: Dr Thomas, yes. ANSWER: There is this existing literature in NICE guidance suggesting that people with physiological long-term health problems, so chronic health problems that a haemophiliac or hepatitis C or HIV already have, what we call -- they are twice if not three times more likely to be ps...
285
2
QUESTION: Ms Edwards. ANSWER: We mustn't forget as well that the things that we're dealing with are also extraordinarily painful, so we're dealing with haemophilia, which can be very painful, for men, for women with von Willebrand, we know there are people with haemophilia who are women as well, these are ve...
286
2
QUESTION: Then moving on to the theme of communication, some of the evidence we've heard suggests that people were given their diagnosis or information about their diagnosis either in a group setting or in a non-confidential setting of some other kind, being -- something being 185 called out across a corri...
287
3
QUESTION: Caz, in 1992, if I can ask you to think back to then, you were undergoing treatment for cancer, Hodgkin's disease, and in the course of that you ha d three transfusions. ANSWER: I had the first transfusion prior to diagnosis, because I was 24 weeks pregnant and I had pregnancy-related anaemia, and the...
288
3
QUESTION: That was in March 1992? ANSWER: That was March 3, I think.
289
3
QUESTION: Then you had two subsequent transfusions in May 1 993 and July 1993? ANSWER: Yes, that was after two six-month rounds of chemo .
290
3
QUESTION: I think it's also right that in the course of the treatment that you underwent for your cancer, you h ad a range of medical interventions: biopsies you've referred to, blood tests, Hickman lines, and so on? ANSWER: Hickman lines. I had two six-month rounds of che mo; so there was a Hickman line permanent...
291
3
QUESTION: Were you at the time of any of those transfusions given any information about any risks of infection? ANSWER: Not that I remember.
292
3
QUESTION: Now, in 1993, you were diagnosed with hepatitis C . ANSWER: Yes.
293
3
QUESTION: I understand around that time you also developed Jaundice. What can you recall about that? ANSWER: I was screened because I had two six-month rounds of chemotherapy that were not enough. I was then screened for a bone marrow transplant. Had I never had to have the bone marrow transplant, I probably ...
294
3
QUESTION: At the time you were diagnosed with hepatitis C, you obviously had a lot else happening in terms of medi cal treatment. You were about to have what you describ e in your statement as a high dose of chemotherapy. Can you remember what, if anything, was your reaction to being told that you also had hepat...
295
3
QUESTION: Can I ask you then to describe how the hepatitis C began to affect you both physically and mentally? ANSWER: It's hard to separate it from the recovery from a year's chemo and then a bone marrow transplant, b ut I did start to pick up in the years after the bone marrow transplant, probably until around ...
296
3
QUESTION: Can I ask you a little about the brain fog. You described it in very vivid terms in your statement and I wondered if you could give some kind of sense of how that affected you, how it felt. ANSWER: It would be hard to connect the synapses in the b rain. It would be hard to find words. You'd know what...
297
3
QUESTION: What about the fatigue, the chronic fatigue? Aga in, are you able to give a sense of what that was like? ANSWER: The fatigue is so deep and so profound that no am ount of sleep fixes it. You wake up in the morning feel ing jet-lagged, feeling as depleted as you did before y ou went to bed. People will...
298
3
QUESTION: I think the way you put it in your statement, Caz , is the fatigue was not helped by sleep, it wasn't something you could push through. It was at times completely incapacitating, couldn't even get out of bed. ANSWER: You couldn't push through it with willpower. I c an remember coming home from art sc...
299
3
QUESTION: As the symptoms progressed, I understand you bega n to experience a range of other effects of the infectio n, fibromyalgia, a sense of near permanent flu; is tha t right? ANSWER: I had to stop going to yoga because I'd have musc le aches afterwards, for days afterwards, if I did anything strenuous. If...