Heather Leake Date
Principal Pharmacist (HIV/Sexual Health) Brighton and Sussex University Hospitals NHS Trust
In the UK, I think HIV must be one of the most rewarding specialties that a pharmacist can work in. It is intellectually stimulating, and there are always new things to learn and new challenges, so one could never get bored. There is also the chance to build up relationships with patients over many years and to be a really valued, integral member of the healthcare team. In a specialty where new drugs are continually being developed and drug interactions and side-effects are prominent features of most of them, the scope for pharmacist involvement is huge.
My post is funded by the Department of HIV and Genitourinary (GU) Medicine, although I am still employed within Pharmacy. We have three other posts in the HIV team that are similarly funded (another specialist pharmacist, a specialist pharmacy technician and a rotational basic grade, who is half funded by Pharmacy). These posts, which I manage or help to supervise, are based in the pharmacy at the Sussex Eye Hospital, where all our HIV/GU outpatient dispensing takes place, along with two other rotational staff who are supervised by the ophthalmology pharmacist (who is based at the nearby Royal Sussex County Hospital).
My office is at Brighton General Hospital on the day care unit of the HIV ward (the Elton John Centre), which is convenient and also enables me to keep my “finger on the pulse” of the day-to-day goings on. However, I am (due to the multisite nature of the Trust) a peripatetic character, usually travelling the 1.5 miles between Brighton General Hospital and the Eye Hospital/HIV clinic about once a day.
An overview of the working week
It is difficult to give one typical working day, because each day of the week has its own distinct pattern and no two days are the same. For example, Monday begins at 9am with the Brighton General Hospital Pharmacy staff meeting; Tuesday morning I am in clinic; Wednesday morning is when we have our HIV/GU clinic educational and departmental meetings (eg, feedback from conferences, audit presentations, and the monthly HIV/GU Therapeutics and Protocols Group, which I chair).
Thursdays begin at 8am with our HIV multidisciplinary meeting – thankfully we have breakfast together after that to make up for the early start. We then have the main ward round of the week, which consists of a multidisciplinary roundtable discussion of all the current inpatients, those who have been recently discharged and anyone “waiting in the wings”. Attendance at this part of the round normally numbers about 15, and it lasts anywhere between one and two hours. Then a small group of us actually go and visit all the inpatients – usually the consultant who is looking after the ward, a specialist registrar, the ward senior house officer, a nurse and me.
Monday and Friday mornings generally involve a smaller ward round at the Elton John Centre, with just the ward senior house officer and consultant. We have seven inpatient beds, although often we have at least one medical outlier (who will be cared for by their own medical/pharmacy team).
Most people with HIV infection who are hospitalised are “late presenters” – those recently diagnosed with advanced disease and significant immunosuppression – who therefore need to start antiretroviral therapy soon after their diagnosis. They have often been seen previously by other medical teams with what was (with hindsight) an HIV-related problem, and by the time they present to us they frequently have opportunistic infections, such as Pneumocystis carinii pneumonia. We have a couple of useful videos and a variety of patient information leaflets that we can use to supplement the discussions that the consultants and I will have with patients before they start treatment.
On Tuesday mornings I have my antiretroviral clinic at the Lawson Unit (our HIV outpatient department). I see up to five patients for 45 minutes each (or longer if needed), to discuss ARV therapy. I see virtually everyone before they commence therapy for the first time or change drug combination. This can be one of the most rewarding parts of the job.
Addressing patients’ treatment concerns
Some patients will have been very recently diagnosed with HIV and find that they need to start ARVs almost immediately, while others may have known they were HIV-positive for many years.
Everyone brings their own particular concerns and health beliefs, not to mention their different life circumstances. I believe that it is vital for me to try to understand some of these issues if I am to help them effectively manage their HIV treatment. A high level of adherence to ARVs (>95%) is necessary for their sustained success, and the implications of low adherence and treatment failure are enormous for the individual, for public health, and for the cost of care. Adherence support, in its broadest sense, is therefore one of the key features of the service our HIV team provides.
Part of my role is to ensure (as far as possible) that each patient has had his or her concerns about treatment addressed and appropriate adherence support offered. This might include practical compliance aids, referral to one of our community-based clinical nurse specialists for home support, or admission to the Sussex Beacon (a continuing care facility for people living with HIV) for initiation of therapy.
Fear of ARV side-effects
On this particular day, my first patient is a 43-year-old gay man who was diagnosed HIV-positive in 1989. He has never taken ARVs before and is reluctant to start now (even though his CD4 count has been less than 200cells/mm(3) for over a year). We generally recommend patients start therapy before their counts drop below 200, as this is the level at which they become particularly prone to opportunistic infections. This man has a good rapport with his clinic doctor, but so far she has been unable to persuade him to start treatment, so she has referred him to me to discuss the issues.
We talk about the difficulties for him having been diagnosed with HIV for over 10 years, and how this has affected his perception of ARVs. He is of the generation of people with HIV who saw friends and partners die when the only ARV treatment was zidovudine monotherapy. Many of them still have a deep-seated fear of zidovudine (AZT), and occasionally some refuse to take a combination containing it. I explain to him the difference between the way AZT was used in those early days (higher doses, monotherapy, etc) and its successful use now as part of combination therapy. He is an intelligent man and understands this “with his head”, but it is a different matter to convince the heart. Nevertheless, maybe some seeds have been sown.
Like many people, his main worries are about drug side-effects. It is no good pretending that they don’t exist or downplaying the possible implications, because we will lose all credibility (as well as doing our patients a disservice). However, it is important to put them in perspective. So we talk about some of the possible short-term and longer-term side-effects of a couple of different ARV combinations, and what we can do to monitor for them or minimise their impact. I reassure him that most patients tell me that the side-effects are not as bad as they feared – it is the uncertainty that most people find hardest to cope with, so anxiety tends to be highest just before starting therapy.
We talk further about the practicalities of taking combination therapy, of the importance of adherence and the prevention of viral resistance. Then we discuss the reason for recommending treatment for him at this stage.
With a CD4 count below 200, he has a 95% chance of developing an “AIDS-defining illness” or dying within the next three years. However, he feels perfectly well and has never had any serious HIV-related complications. Moreover, because treatment guidelines have changed several times over the last six years, doctors have advised him on many other occasions (when his CD4 count was higher) that he should take therapy. Since he has (so far) apparently been proved right in his decision to stay off treatment, why should he now take heed of this latest recommendation?
Honesty is the best policy as far as I am concerned, so I explain how and why treatment guidelines have changed and why we really do think that now is a good time for him to start ARVs. Fortunately, this is an area where recent data from large cohort studies are quite persuasive. It may not persuade him right now, but at least he is aware that the treatment recommendation does have some scientific basis.
In the end our discussion lasts for an hour and a half (luckily there was a vacant slot after his appointment), but I hope it has been useful for him. He doesn’t want to make a decision there and then, but will mull things over and discuss them again with his doctor in a few weeks time. I hope I’ll see him again in the not-too-distant future, when (I hope) he decides to start therapy.
The newly diagnosed patient
The next patient I see is at the other end of the diagnosis spectrum, but has a similar degree of immune suppression. He is a 30-year-old gay man who is still adjusting to his positive HIV result, which he only received three weeks previously. He has never taken regular medication before and is very concerned that none of his colleagues, friends or family should know he has HIV infection or is on treatment.
We discuss how to take the combination that has been recommended for him and how he can incorporate it into his daily routine. Side-effects, interactions (including with herbal and recreational drugs), adherence and resistance are all addressed. I write the prescription, ensuring he also has some antiemetics, and put a note on the prescription for my colleagues in Pharmacy to show him the various compliance aids that we have, so that he can choose the one he thinks will suit him best.
Then I take the prescription to a doctor to be signed (roll on pharmacist prescribing!). I refer him to one of the clinical nurse specialists and ensure he has all our contact details. Then I make sure he has an appointment for review with the doctor in four weeks time and tell him when to come back for his routine blood tests. And then I direct him over to pharmacy for the next stage of his journey.
Not enough hours in the day
After seeing all the patients, I have to make sure I have documented everything in the clinic notes and made all the referrals and follow-up calls I needed to. I usually grab a sandwich while I am doing this and finally get back to the ward and my office by mid to late afternoon. After visiting the ward, I can then settle down to answering emails, returning telephone calls and trying to make progress on the never-diminishing intray. Now if there were more than 24 hours in a day, just think what I could achieve!