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Posted on May 3rd, 2014, by

Transcriptionist note: All of the interviewer’s encouragements have not been included as this interrupted the flow of what the interviewee was saying

 

Q           Okay so today is the 14th June and I’m here with Philippa, erm and Philippa has agreed to discuss with me some of her experiences of working with people who are HIV positive and over 50. Erm so Philippa can you tell me a bit about your role and how you come into, to contact with this particular population group?

P           Erm, okay so I’m an HIV Consultant so I see them erm in outpatient clinics um and in, as inpatients in hospital, so I sometimes erm, just as in HIV positive people of other ages, they sometimes, erm they get, they come into hospital without knowing they have HIV and have a test which is positive erm and sometimes I meet them because they’ve been having care elsewhere and transfer here or sometimes they’ve been under 50 and then turned 50.

Q           Okay.

P           ((00:00:52?)) HIV.

Q           Okay and so the people that you see that are over 50, what are they generally like, what are some of the, the problems they have, the challenges they face?

P           Um, I don’t have that many patients who are over 50. Erm, the ones I have are ((pause)) there’s I would say, they’re probably evenly, well, their, their ethnicity is more mixed, probably, than the under 50s, in that erm, I’ve had white people who are over 50 and I’ve had erm, Caribbean’s who are over 50, erm, and some Africans who are over 50. Erm, I think those are the only people I’ve had so far who have been over 50. Erm, and the, so the good things about them is that they’re usually fairly um, their social situations are usually fairly good compared to the younger people.

Q           Erm can you elaborate a bit on what you mean by social situations?

P           Well, they’re, they’re ((sighs)) they’re more likely to have somewhere stable to live and some sort of stable income. Erm and they are, are they more likely, they, I think the people I’ve known so far actually, probably mostly haven’t had partners. But ((pause)) they haven’t been actively looking for people, this is a gross generalisation, but this is just comingso, so they’re not, they don’t seem to be as in need of extra, er, well of, of sexual or sort of romantic partners, erm and the downsides are that they are isolated, more at risk of being generally socially isolated because if they’ve got ill health they might not have people who can visit them. Erm, and they often, because of their age, have been diagnosed late. So especially people who are African, people don’t think about HIV and so they don’t get their diagnosis and they sometimes get treated incorrectly for the wrong diagnosis, which has at least in one case really caused problems with treatment of the HIV related condition.

Q           So can you elaborate a bit on that? Tell me what sort of problems?

P           Well that one, in particular was a lady who was over 50 and she had cryptococcal meningitis which presents with a bad headache. And because she was over 50 and nobody had thought of HIV, although she was African, she had been sent to the general medics who had done some tests and thought she had temporal arthritis which is an inflammation of the artery, you know on the outside of the brain, er the outside of the skull. And so they had given her the treatment for that which is high dose steroids. And that meant that that had damped down her immune response, which meant er, that erm, which meant that her symptoms for the cryptococcal meningitis had been partially controlled just by that although the infection was raging away and causing damage. And erm, so when she started treatment for the cryptococcal meningitis, erm, so when she started treatment for the cryptococcal meningitis we had to get her off the steroids, because they’ve got long term side effects, you can’t stay on high dose steroids for a long time, and it would delay healing with cryptococcal meningitis, but she got an exaggerated inflammatory response when we tried to withdraw the steroids and had a very, very complicated course.

Q           Yeah. And is that the point which then HIV was ((diagnosed 00:04:28?))

P           She was, er no, when she got admitted to, she got admitted to hospital erm with the headache and somebody at that point thought of HIV and thought, did the test for cryptococcal meningitis and diagnosed it, right at the early bit. But it was once we knew she had HIV, once we knew what we were dealing with, trying to mange it was complicated by the fact that she’d had these steroids.

Q           Yeah okay. So that seems like quite an extreme case but in terms of some of the other people that have been diagnosed?

P           Erm, also the other people, there was one white woman who, erm, was diagnosed with, erm, eventually with really severe pneumocystis pneumonia, this is years ago. And erm, she’d been sort of fobbed off with asthma and all sorts of things for ((00:05:14?)) so she was really, really sick, she almost died from that, whereas if she’d been younger and black, somebody would have thought about it earlier I’m sure. Um, and then there was another woman who was diagnosed with depression, for a very, very long time but actually had HIV. So, there’s, there’s kind of examples, and it happens in the younger people as well but I think it’s more likely to happen in older people.

Q           Mmm, mm, so do you think erm, from your experience, that people who are then diagnosed late, does that have some lasting impact on how they sort of get ((00:05:44?)) HIV or?

P           It’s er, yeah anybody, whatever age you are, if you’re diagnosed late, after an AIDS-defining diagnosis you’re long term prognosis is worse. Erm and then the other memorable person who was over 50 was a man who had diabetes and he’d had lots of strokes and he was diagnosed completely by accident because somebody, he was on the stroke ward and somebody got a needle stick injury from him so they did a test and found out that he was positive. And actually his HIV was absolutely fine but he then ended up dying of a stroke. He had multiple strokes after that and ended up dying of that quite soon afterwards. So his erm, yeah it’s another thing that the inter current illnesses are more of a problem.

Q           Yeah okay. And so what are some of the other sort of challenges, do you think, in terms of working with this patient group? What are the challenges you face in, in treating them or in referring them to other services or?

P           Er well they are more likely to need referral to other medical services just because and in ((00:06:46?)) the, we, hospital specialists are not allowed to refer onto other hospital specialists, erm, directly unless it’s cancer or related to the HIV. And that’s a rule made by the GPs and by the PCT which pays for our care, so that if we don’t follow that then erm they will refuse to pay for the next hospital ((00:06:46?)) so it means that we end up doing a lot of writing to GPs and saying we’ve discussed such and such an issue today, would you mind taking it on, and the GPs often don’t. And the GPs will often send, if people go to them with a rash or with a cough, they’ll say, if you’ve got HIV, go to your hospital specialist and deal with thatand that happens again, through age groups but it’s, I think, the GPs are, so it is probably exaggerated in older people just because there’s more other problems.

Q           Yeah, yeah. And so I mean can you give me an example of a case that you perhaps have resolved erm, sort of in this ((00:07:51?)) systems, have you had ((00:07:53?))?

P           Erm

Q           An example where you’ve resolved the situation and how you come about to resolve that?

P           Yes, but it’s not in an over 50. Erm, I’m just trying to think of((pause)) o, okay, well there’s er, one woman who I think is over 50, who was on lots of medicines from her GP including a statin. And has lots of aches and pains and everything, generally, and she was on lots of pills, partly from us and partly from her GP for her other medical problems. And so we had a discussion about whether or not she should stop the statin in case it was causing her aches and pains. And so I, you have to be really careful not to tell the patient what to do because it has to be the GPs decision, otherwise they get upset and rightly so. So we discussed it and I wrote a letter to the GP saying we’ve discussed it and I’ve asked her to come to you to get an answer on whether or not she should try stopping her statin. And then she did stop and the next time she came back to me nothing had got better so I then wrote, talked with her again and said would you, you know your cholesterol has gone up since you’ve been off it, erm, given that nothing has got better, you, you might want to consider going back on it. And then written another letter back to the GP to say exactly that, that she’s coming to you for the final decision. And so I don’t know what the outcome of that has been, so I think sometimes communications like that work but it means the patient has to be quite proactive. And it means you have to be quite careful in the wording of your letters.

Q           Yeah, yeah, yeah. And so do the patients also get a copy of the communications ((00:09:39?)).

P           Yes they’re always offered it.

Q           Okay, okay. Also thinking about your practice and sort of the, the way you treated patients, do you think it’s changed in any way since you started seeing people over 50 with HIV? Has it changed the way you, you do things and ((00:09:54?))

P           Not specific to the people over 50. I think, I mean the services are changing but not related to age. I think the thing that might change in the future is all the stuff about ((fracture 00:09:54?)) risk. And also cholesterol management because erm, those are two things which, er we don’t really know what the best way forward is for the patients. And once we know, there will still be the challenge of getting the GPs to know and to take that on board and I think there will be conflict between, about who pays for the drugs if they’re indicated. And who decides whether or not they are indicated usually.

Q           Yeah, yeah, okay. Good. Erm, so thinking about, you talked a bit about health aspect of the people that you see who are over 50 and in terms of sort of you, you, and you mentioned a bit sort of the social circumstances, erm, so thinking about perhaps what types of services in terms of both health and social circumstances, what type of services do you think they would benefit from or do you think that they, you know they, that they do need now and you perhaps don’t have you know a solution or, or know how to offer it, ((00:11:15?)) in terms of various service?

P           I think for social erm contact, they need support groups, which are geared towards them. So at least one of my patients was saying oh you know I don’t go to the sort of these groups because they’re ((00:11:37?)) for me. And I think actually there is an over 40s or an over 50s group there but you know ((pause)) I think people do feel that there’s the young people and then there’s them. So, so they need things which are appropriate to them. I think medical care wise I can’t see that there’s a big issue with the over 50s, I think you know maybe the over 70s you know, we’ll be getting towards that quite soon and that’ll be a problem but the over 50s don’t tend to have more mobility problems than the under 50s.

Q           I guess from your experience when do you start to see, I guess some of the more erm age related issues cropping up in ((in these particular 00:12:16?)) patients?

P           Well I mean as far as, hypertension and, and lipid problems by late 30s, you know definitely by their 50s you’re getting some but as far as, you know, osteoporosis and erm, ((sighs)) and just general frailty, I ((really haven’t 00:12:41?)) seen many yet, no.

Q           Okay, good. Erm, in terms of I mean what you would like to see perhaps in terms of what you, how you treat this patient group and how you perhaps work with them and work with the other service ((00:12:56?)) what would your ideal sort of scenario be, what do you think would sort of facilitate erm, better working with this patient group?

P           Erm I, I think you just need a flexible approach because at the moment they are a minority group and that’s a, you know the other minority groups are the non African heterosexuals and the drug users and the, the young people and, they’re all about kind of the same size so I think it’s probably unrealistic to gear a specific service to the over 50s at the moment erm, but I think as the population grows then it might be worthwhile having a erm, a special clinic which looks at the cardiovascular risk or where you’ve got a single person making assessments ((pause)) but erm, I think that depends on what the evidence comes out as.

Q           So you said more flexible, so what do you see perhaps about the system that you work in right now, that’s inflexible or that you’ve found to beyeah ((00:14:10?)) essentially?

P           You see from my, I don’t think that there’s much of a problem managing them. I mean that, that’s, I don’t see very many and it may be that they do see problems and that’s why this study is really important but from my point, I can’t see that they need really anything more special than the other groups, in fact they’re, they’re le, they’re kind of easier to manage from my point of view than the other.

Q           And, and you would say they’re easier based on your experiences because of I mean you pointed out some issues where not being, you know additional ?

P           Well they’re, they’re, they’re not usually putting themselves at additional risk of sexually transmitted infections for example. And transmission to other people doesn’t tend to be as much of an issue. They’re not having babies, they are usually, as I said, have somewhere safe to live and have usually got some sort of income set up so that they are settled and can take their pills and they can usually make it to appointments and erm, so yeah, in, in some ways they’re more stable and, than anybody else.

Q           Okay. Good. Erm so thinking about future research in this area, what do you think erm, needs to be explored? You’ve hinted at perhaps over 50s, 60 perhaps maybe we’re not ((00:15:35?)) thinking about other issues yet, or, or seeing many other issues but perhaps once they start to hit 70 and older we might be seeing you know some, some real issues emerging, so what do you think needs to be explored?

P           I think, the, the big sort of physical questions to be answered are, how do you accurately assess cardiovascular risk in, in over 50s really and going on up? How do you accurately assess risk of fracture from osteoporosis erm, and what do you do about it for both of those you know. Erm, and then I think the other thing is, the social side of it is probably what social networks can there be set up which might include dating networks or whatever. I think those would be the main, you know the main things.

Q           Yeah okay. Erm ((00:16:36?)) erm just quickly, erm, thinking about any sort of services that you refer your patients onto, can you, can you think of any that you often say, this is really good particularly for the over 50s, this is really good, you should go along. Do you have anything that you often refer them to?

P           Well Positive East is always really good, basically. Erm, and that’s really the only one that I regularly refer to so. Apart from the, the community nurse specialist who it doesn’t really matter what age they are so.

Q           Okay. Anything else you’d like to add at all?

P           ((pause)) Erm, well no, just it would be good to hear what the patients have to say really so.

Q           Yeah. Okay, all right. Thank you very much.

P           Thanks

 

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