A bird’s eye view of the HIV field: interview with HIV nurse consultant, Loek Elsenburg
Here, we talk to Loek about his bird’s eye view of the HIV field in the Netherlands.
“I haven’t always been an HIV nurse consultant”, explains Loek. “Around 10 years ago, while working as a manager in the healthcare sector, I got talking to an HIV nurse consultant. I became so interested in the work done by HIV nurse consultants that I decided to make a career move. It is such a special job, during which you build long-term relationships with people. You first meet them just after they’ve received quite shocking news. The fact that you are one of the first people they speak to after this news, forges a special bond.”
He continues, “I have since become involved at the HVN as board member, representing Medical Issues and Care, and now represent the HVN on SHM’s board to ensure that the patients’ data is used appropriately and that anonymity is guaranteed.”
What role do nurse consultants play in HIV care in the Netherlands?
“As a nurse consultant I tailor my approach to each patient, but life with HIV is central. We regularly discuss subjects such as who to tell, which combination therapy works best for the patient, treatment compliance, restoring and maintaining immune function, sexuality, and intimacy. We are also focussing increasingly on lifestyle. Many people want to take steps to live healthily with HIV , which we encourage. We discuss stopping smoking, but also issues like drug use and high-risk behaviour. Other patients are less concerned about lifestyle issues, and we try to motivate them to incorporate changes into their lives. Of course, all within reason and taking into account an individual’s personal life and abilities."
"Having an undetectable viral load is becoming less of an issue for nurse consultants, and the focus is shifting to increasing awareness of the fact that, with an undetectable viral load, the virus can no longer be passed on. For many people, this knowledge reduces the stigma that persists around HIV.”
“Has HIV care changed much during the past years?
“Yes, things have changed in the last years. For example, because the current treatment is so effective and very few people experience treatment failure, patients only have to come for a check-up two or three times a year and blood work-ups are also only needed every 6 months. Of course, financial cut-backs play a role in all this was well.”
SHM collects the latest figures about HIV in the Netherlands. The data are used in national and international studies and are reported in our annual Monitoring Report. We also provide HIV treatment centres with centre-specific and patient-specific reports*. In what way do SHM’s data help you in your work?
“I use SHM’s data regularly. The centre-specific and patient-specific reports are not only interesting for doctors and for nurse consultants like myself, they are also helpful for patients; graphs and pictures always make more impact than simply words. For example, if a patient asks why their CD4 cell count is not measured as frequently any more, I can use the graphs to show them that their count has been stable and that the graphs help us to predict the course of their disease. Patients usually appreciate this insight and I regularly receive requests for a print-out now. It’s important that patients know this information exists; after all, the data came from them in the first place.”
Alongside your work as HIV nurse consultant, you are also active in the boards of the HVN and SHM. Have these roles had an effect on the way you carry out your work as nurse consultant?
“As a result of my roles at HVN and SHM, I find I don’t only consider healthcare as a professional, but also as a representative of a patient association. Although I‘m not constantly swapping hats, I do always ask myself: ‘how would this benefit someone with HIV?’. As a result, I look critically at clinical studies and try to raise as yet unanswered questions that I hear from patients through the HVN . Similarly, I try to act as an intermediary between the HIV treatment centres and the HVN, making my fellow nurse consultants aware of current issues within the patient association; this isn’t always easy. However, the good thing about the HIV field in the Netherlands is that there is very good communication and collaboration between all the organisations in the field. As a result, we have been able to achieve a great deal up to now.”
What do you think HIV care will be like in the future?
“I am quite critical about the future of HIV care in the Netherlands. I can see considerable changes taking place in the role of the HIV nurse consultants who are gradually moving towards more medical care and tasks such as physical examinations. I am concerned that there will no longer be room for things like discussing lifestyle choices and adjustments, something I feel actually deserves far more attention. I also think it’s important that HIV treatment centres continue to strive to provide tailored care. If we continue to see the patients so infrequently, we may discover things too late, and we will also start to lose the close relationship we have with the patient. More importantly, some patients actually do need more care and I feel we should be able to continue meeting this need.”
*SHM’s patient-specific and centre-specific reports offer HIV treating physicians and nurse consultants insight into their own patient population, both at the total population and patient-specific level. For each registered patient, raw data are available that provide an overview of the course of the patient’s HIV infection. The centre-specific reports provide treatment centres with insight into the developments and trends within their own patient population and allow them to compare these with the general trends in the Netherlands. Both forms of reports can only be viewed by physicians and nurse consultants.