HIV Transmission: No “Good AIDS/Bad AIDS”, just people

As a newly appointed HIV psychologist, I’ve been taking some time to better inform myself. I’ve been reading NAM’s Living with HIV and this in itself has provided an opportunity to examine societal (and my own) prejudices. I notice my own resistance to reading the book on the bus. Will people assume I have HIV? Will they assume I’m promiscuous or a drug-user? As a young white woman, perhaps I’ll engender pity, probably the victim of an assault or an infected blood transfusion? Why does it matter to me if people make these assumptions?

As we come to the end of HIV testing week and prepare for World AIDS Day (1st December) HIV is very much in the media. An article interviewing Silvia Petretti of Positively UK really stood out to me

“How did you catch HIV?

I find this question very judgmental. Whether I say that I got HIV by selling sex, injecting drugs, from my husband or my mother in the womb, this puts me in a category.  Either I’m an innocent victim or somebody reckless, who got what they deserved – as the coverage around Charlie Sheen seemed to suggest. It’s the reason so many women living with HIV shy away from the media. It doesn’t matter how I got HIV. It matters how I live with it.”

To me, this quote gets to the heart of our attitudes towards HIV. When we find out someone has HIV we want to know WHY. We associate HIV with sex and sex always gets our attention. Perhaps this curiosity is born out a society that devours salacious celebrity gossip and online rumours, but often there seems to be a darker side to it. Underlying the question is a sense of placing blame. Who is at fault? How did they allow themselves to be infected?

But do we really have a right to know someone’s transmission story?

Although certain groups are at greater risk of HIV, sometimes people just get it and it’s hard to pin it down to something they did or didn’t do. Many people have the virus and don’t know their status and with a late diagnosis it becomes increasing difficult to establish how it was transmitted. Many people living with HIV don’t know how they contracted it, and have to live with this uncertainty.

If a gay man contracts HIV is it easier for us to condemn his sexuality and “irresponsibility” rather than try to understand and relate to his experiences? Perhaps it is easier for us to cope with the possibility that any one of us could catch HIV, by thinking that it only happens to “bad” people.

Petretti mentions the media coverage of Charlie Sheen’s disclosure of his HIV status, which falls a bit too close to the BrassEye’s satirical sketch on “Good Aids/Bad Aids”. In the mock-documentary Chris Morris admonishes a gay man for having “bad AIDS”, the kind that’s your fault for getting.

NB – This is a very dark comedy and could potentially be offensive or triggering. 

 

Sheen’s disclosure could be a turning point in attitudes towards HIV – an image of a public figure living well with the virus. For many their image of someone with HIV was born out of 80s campaigns and they view HIV very much as a death-sentence. Many people don’t know that with good treatment adherence, viral load can be undetectable (meaning that you can’t pass the virus on, even if you have unprotected sex) and life expectancy is only a little less than that of the general population. Media has instead focused on his lifestyle, making assumptions about how he contracted the disease. With good treatment, many people’s immune system is supported so they don’t go to develop the infections associated with AIDS. In many ways, people can live ordinary lives, aside from regular medication and review appointments.

Charlie Sheen, the most recent celebrity to speak openly about his HIV positive status

This early newsreel from 1982 is particularly moving, released before HIV was really known about. It describes a form of “cancer” that seems to be affecting gay men. This is before HIV-stigma set in and it was seen as an illness rather than a judgement on someone’s life choices.  As our understanding of the virus has increased, so too have stigmatising attitudes that criticise and exclude.

We have no right to know how people contract HIV, that is their own story to share as they see fit. Condemnation and pity are both unhelpful responses. Attitudes towards HIV limit people from getting tested and disclosing their status, which increases the risk of transmission. Although HIV is often transmitted through sexual contact, in many ways it is comparable to other infectious diseases. It’s a long-term condition and if treated appropriately, it should enable the person to live a “normal” life and not endanger any other person. There is no “good” or “bad” AIDS, no more or less deserving. When we can detach ourselves from our seedy fascination with knowing the hows and the whys, we can allow ourselves to take a step back from our ingrained prejudices. Then we can really see the person.

Asking about gender – inclusivity and trying to get it “right”

The young person sat in front of me is noticeably androgynous in a loose tunic, with elfin features, the sharp cheekbones of a male-model, and an overgrown pixie-cut. My assessment form demands a tick in the box, are they male or female? I wonder if they fall somewhere outside of this binary, if maybe they define themselves as genderqueer, or somewhere else on the gender spectrum. Maybe they don’t use any label for how they see themselves. I’d like think of myself as reasonably open-minded and something of an ally for LGBT rights and gender diversity, so I want to make an effort, to get it “right”. But I’m also conscious of causing offence – what if they do identify as male, will they be insulted by my asking? Maybe they’ve had a lifetime of being mislabelled as feminine. Will this break down our relationship before it’s even begun?

“What would you like me to put down for gender?”

(pause, confused expression) “Um…male”

“Okay… I only ask because some people identify as genders different from “male” or “female””

“Oh yeah… I know some people like that”

“Okay, what shall I put for your ethnicity?”

And so we move on.

This encounter made me think about how I ask questions about demographics and diversity. In healthcare often the forms we use as restricted – used to generate statistics and leaving little room for greyer areas. But there are many aspects of personhood that aren’t immediately obvious. I have no difficulty asking someone their age, but somehow checking in with someone about issues such as gender and sexual orientation feels more difficult – my concern is that others will think I have made assumptions about them, “What makes you think I’m gay?”.

One way of making diversity questions less personal is to ask them routinely, even when the answer may appear “obvious”. Guesses at ethnicity and sexual orientation are also open to error without checking in (for example: someone who appears caucasian but is actually of mixed heritage). It is time-consuming to run through these kinds of questions but when I have the chance I do find it helpful. Most of the clients I work with have “majority” characteristics but they are rarely offended when I ask anyway. Often the form can be a starting point for these conversations “It’s something we ask everyone” and can reveal difference that isn’t immediately obvious in a relatively safe manner. Giving people assessment forms to complete themselves may also be another route, and including “other” boxes alongside diversity checklists. I also wonder, for those who sit in the majority groups, whether being asked the question provokes some thinking about diversity and brings a degree of normalisation.

NB – I don’t consider myself an expert on these topics, this is merely a reflection on my own experience. I recommend anyone interested in informing themselves about being sensitive and inclusive towards gender diverse individuals do some research – e.g. BPS, genderbread  , Christine Richards. 

Endings, yet again. Thoughts on coming and going.

This week marks a new milestone for me as I leave my first qualified job. It also marks a year since I completed my training (additionally it’s also a full 10 years since I started at university as an undergraduate, where does the time go?). Training, with its 6 month placements, had its share of endings. As I began therapy with clients I explained that I was a student, giving them my leaving date. The ending was out of my hands, it had been already decreed, and it wasn’t personal. The teams gave me cards, cake and flowers and wished me well for my next stage. To date my endings have tended to relate to pre-imposed deadlines or expected career progression. No one begrudged me leaving my graduate post to take up a position on a doctoral course, if anything it reflected well on the team and they wished me luck for the future.

Now, in a permanent post, I have a entirely new experience. I am forced to choose my own ending. My leaving has been met with mixed responses by the team. As a young (ish) newly qualified professional, it doesn’t surprise some that I want to try my hand in other areas. My leaving unfortunately increases burden on other staff, who will inevitably have to should some of my workload. Inevitably I feel some guilt about this. As with many teams, there are some organisational issues and stressors, and my leaving perhaps brings up some mixed feelings in those left behind to hold the fort. I felt disloyal, using my leave to go to interviews, staying quiet in team meetings whilst future plans were discussed. I don’t have the excuse of a deadline or a geographical move to fall back on, I need to own this ending. Responses to my leaving have felt quite muted and I’ve been surprised by how upset this has left me feeling. I don’t know what I expected, some kind of pat on the back, for others to celebrate my departure. Whilst it’s been a very important year for me, other staff have been there far longer and seen many people come and go. It has the flavour of an amicable break-up where we decide to forgo discussion of difficult feelings to keep the peace.

Given I’ve been working with clients with cognitive impairments; there have been some additional complexities to my leaving. It’s felt like a sore topic – many of my clients aren’t free to go and some see me as holder a “jailer” position. I am often working “behind the scenes” so much of caseload don’t have regular therapeutic contact with me. Many are very disoriented and forgetful so it’s been difficult for them to understand when I’ve explained my leaving. It is a strange dynamic, many of clients don’t really understand who I am or what I do, and I doubt they’ll experience much a loss when I’m not there! But at the same time we have informal contact daily and I’ll miss seeing them and hearing their unique perspective on life.

When I left the building for the last time I found myself just sitting in my car just watching the building, a strange heavy feeling in my stomach. I feel the frustration of missed opportunities – projects and initiatives I was never able to complete, ideas that never took hold, plans that never materialised. Sadness too, for the connections I’ve had with staff and service-users, that I’m giving up to step into something completely new and unknown. That night I dreamt of reports still to do, work left undone. But it’s over now.

The experience of leaving reminds me of my ongoing process of separating myself out from my job. Working in healthcare will never be “just a job”, but similarly it’s not the entirety of who I am and a job needs to serve my needs as well as my clients’.

FYI – My new posts are a split between a service for Medically Unexplained Symptoms and an HIV Clinic – I’m sure I’ll have a lot to write about this soon!

Working 9-5: if only! Towards 24/7 healthcare

 http://youtu.be/UbxUSsFXYo4

If you work in healthcare you can’t have missed the recent outrage around government intentions to move the NHS to a ‘7 day service’. Thousands of people have signed a petition calling for a vote of no confidence in health secretary Jeremy Hunt. Mr Hunt hasn’t endeared himself to me, moly sorting from the point where he tried to shut Lewisham Hospital, a recently renovated site that serves a huge population of South Londoners and was noticeably not failing. Following public outrage and months of protest around the legality (not to mention ethics of making hundreds of sick people travel an hour to another busy A&E department when there’s a decent one nearby), the plans were reversed and Lewisham H still stands.

A 7 day health service is a good idea. People don’t just get sick on working hours and we need to accommodate them, not the other way around. But it’s also not a revolutionary idea. I don’t know if you’ve been to a hospital on a weekend. I have and I can assure you it’s still open. Doctors and nurses work long hospital shifts around the clock every day of the year. It is a fallacy to suggest that they don’t or won’t work weekends – they rarely have a choice. Walk in centres are open weekends, and many GPSs offer a Saturday clinic. Mental health crisis teams cover weekends, keeping people in great distress safe and out of hospital. But Friday night is still not a great time to get ill. Whilst NHS staff do work weekends, it’s usually not the full working force that you’d get on a weekday. Additionally, doctors don’t work in isolation. There work depends on other staff, many of whom do not work weekends. Discharges may face a length delay whilst waiting for assessment from a social worker, occupational therapist or physiotherapist. Scans and tests need to be carried out an analysed. If transferring to another team then liaison is needed, and administrative staff for all the records and associated paperwork. A 7 day service is needed from all staff to keep the operation working.

The more I work in healthcare the more I feel like I’m in someone else’s game of Theme Hospital

If you never played this simulator game back in the 90s then you surely missed out. The basic premise is that you’re running a hospital. You build walls, stick in different rooms and allocate them different functions (diagnostics, treatment etc), hire staff and design the building to include seating (important), toilets (very important) and an array of vending machines to keep everyone happy. It’s best to design the hospital for a quick in’n’out for patients, to save the staff time. 

People are points, the more you get through the door and the more you cure, the more money you make and the closer you are to levelling up. Once you’ve got your reception area set up patients start flooding in. They have bizarre conditions such as Bloaty Headedness (an abnormally large head that requires surgical deflating), Slack Tongue (requiring stretching and cutting) and a range of wonderful psychiatric conditions including the King Complex where sufferers believe they are Elvis. Sometimes you have no idea what to do with them so you can chance an experimental cure or throw them out before they make the hospital look bad.

An advantage the game has over real life is that you can tell people’s mood and how sick they are just by looking at them, which is great as people give you some warning before they complain/die. Waiting lists are easily manipulated by dragging and dropping people in the queue. If something important happens for some reasons people use a fax to tell you.

You’re always trying to turn a profit and compete with the glossy rival hospital. Research improves your treatments but it’s expensive. Inspectors and important people turn up out of the blue, causing everyone to panic. Usually you can fool them by building walls to hide the worst bits of the hospital and making the place look nice with some pot plants. It’s best to chuck patients out if they’re looking likely to die on the premises as that isn’t good for the hospital’s reputation or staff’s morale.

You get applications for staff and get to pick between the more expensive and the more…. professionally dubious. When staff complain you can give them more money or fire them. It’s a good idea to take care of them so they work better, but that takes up time, money and valuable space. Back to work!

If you do well you’re quickly poached by a rival hospital. If you do badly, the corridors are overflowing with sick people, bodily fluids and rats and all the staff are miserable. Maybe you should cut your losses and just start a new hospital.

Sound familiar?

For reasons I cannot understand they never produced an update of this game. You can download the original here, it’s pretty low-tech by current standards. My computer’s actually too new to play it now.

Luckily for me I work in healthcare so the game never really ended. Now where’s my head-deflater….

Won’t get well: Trying to understand medical non-compliance

How many unfinished prescriptions are left in your medicine box?

This post was born out of discussions with my doctor friends, who frequently struggle with “revolving door” patients. The kind of people you discharge knowing you’ll be seeing them in a few weeks, maybe even a few days. Individuals who  grudgingly accept treatment, as though intent on remaining sick. Those who fail to follow medical advice, despite the pain and risks they then live with. Questions arise as to whether we should treat these patients at all, whether the resources are justified when they seem determined not to look after their own health.

“Non-compliance” has a very punitive ring to it. We comply with authorities, with court orders and sanctions. It suggests the existence of an external control and an absence of choice. The somewhat softer “non-adherence” is perhaps something all of us can relate to. Which amongst us have not been entirely adherent to medical advice? Perhaps we failed to complete a course of medicine, drank whilst on antibiotics or missed a few doses. This kind of non-compliance is one of the highest rated frustrations for doctors, but is very common.

Who is more likely to be non-compliant?

In a review of 102 papers, Jin, Sklar, Oh and Li (2008) found that those who do not comply are more likely to be male, younger, single, to have a lower level of education. Those who have a cognitive impairment (e.g. dementia), a mood disorder or use substances were also found to be more likely to be non-compliant. The complexity of treatment regime, level of medical knowledge, quality of relationship with the prescriber, and stigma attached with the treatment were also highlighted. However, it may not always be as clear “why” an individual is non-compliant, and attention needs to be given to the paradoxical nature of the behaviour.

Beliefs impacting on compliance

Research suggests that cognitive factors may lie behind this “everyday” non-compliance: faulty and inaccurate beliefs that guide behaviour. Patients may believe that the treatment will be ineffective or there will be minimal consequences to non-adherence. They may believe that they are not “truly” ill or that the treatment will impact them negatively. They may believe that the disease is uncontrollable or have religious beliefs regarding illness, or that an alternative method that will help them more.

Readiness to change

Thinking of the “stages of change” model, many patients may still be at the ‘pre-contemplation’ stage in relation to changing their behaviour. They will need support, education and counselling to progress to a point where they feel capable of change. When medical emergency forces a patient to receive medical treatment, they may still not be ready to engage in change, despite professionals escalating the situation on their behalf.

A good relationship with a professional will be needed to open up a dialogue in which it may become apparent that patients hold these beliefs. In many cases education may be enough to shift the belief, but this will need to be provided in a respectful manner so it can be well received. Motivational interviewing techniques have been used successfully to help a patient to identify discrepancies between their behaviour and their goals.

But what of people with more “severe” forms of non-compliance? Those who seem to actively avoid treatment and seem to exacerbate their condition?