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Your medical supervision

You will receive medical supervision for your HIV at an HIV treatment centre. That is a hospital with a ward thatbehandeling specialises in HIV. There are HIV treatment centres in 18 cities throughout the Netherlands. In Amsterdam, The Hague and Rotterdam you can choose between different hospitals. You have the freedom to choose a hospital and a doctor yourself. Many people simply choose for the hospital nearest to where they live. You can also think about whether you prefer to go to a normal hospital (which are often somewhat smaller) or to a hospital that is connected to a university. University hospitals are often somewhat larger. They also often carry out studies with new medicines. Many people always find going to hospital and hearing the results of their blood tests a bit stressful. But that often gets a bit easier as time goes on. That is especially the case once someone has started taking HIV medications and when it turns out that the side effects are not so bad and that the virus is being properly suppressed.

Internist and HIV nurse
It is possible for you to grow old with your HIV. But for that it is important that you go to hospital once every three to six months for a check-up – even if you don’t feel ill. That way, you can be sure to start with the treatment in time, and the internist can do blood tests make sure the medicines are working properly and not causing any side effects that you might not have noticed yourself. You will have a consultation in hospital with the internist who is specialised in HIV (also known as an HIV/AIDS physician). In addition to that you can get support from an HIV nurse (or nursing specialist; this could be a man or a woman). If you have only just heard that you have HIV, or if you are just starting with HIV medications or switching to other medicines or if you have any health problems, you might have to go to hospital a bit more often. Your internist and your HIV nurse will tell you all about the treatment of HIV. The two most important questions they will discuss with you are: When are you going to start taking HIV medications? And: Which HIV medications will you use? (see page 41) Your HIV nurse will often have a bit more time to spend with you and is often a key figure: he or she can refer you to other caregivers within or outside of the hospital, provide you with information, and otherwise give you tips about living with HIV. Your HIV nurse can be an important source of support for you, especially if you have just heard that you have HIV, if you are just starting with your medicines or switch to a different combination, or if you are having health problems. For some people, the HIV nurse is the person with whom they find it easiest to talk about their HIV; other people only go to see their HIV nurse if there is really something wrong.

The procedure is a little different in each hospital, but it is more and more common for your consultation to be with the internist one time and with an HIV nurse the next time. Some HIV nurses have received further training to become a nursing specialist and can also do other things as well, such as writing out repeat prescriptions for HIV medications. It could also be that you will go for a consultation at hospital one time, and the next time you will get your prescription for HIV medications from your family doctor (GP). But that only happens if your family doctor also happens to be specialised in HIV.

Family docter (GP)
The role that your family doctor will play varies widely. If you have a health problem, it is not always clear if that has to do with HIV, with your medicines, or with something else completely different. Some internists and HIV nurses also give some attention to other problems and will prescribe medications for those if necessary. Other internists and HIV nurses will refer you to your family doctor. Some family doctors are very familiar with HIV and often have several HIV-positive patients. Other family doctors are not exactly up-to-date on HIV. You might even be their only patient with HIV.

Pharmacy
In terms of your treatment, the most important tasks of the pharmacy are:

to provide the right HIV medications in time

There are a number of pharmacies that keep most HIV medications in stock. That means that you will not have to bring them your prescription in advance, so you will not have to go twice each time you need new pills. It happens rather often that the assistants who work in pharmacies do not know how important it is for you to use all your HIV medications every time. For many other medicines, that is not as important. And it may happen that you only find out at the last moment that you are out of pills. It is a very bad idea to stop taking them for a couple of days or to take just one HIV pill but not the other because your pharmacy can only deliver those pills later. Try to avoid this situation by going to the pharmacy well before your pills run out. If at some point you can only get there at the last minute, you will need to be assertive and demand that the pharmacy deliver those pills quickly: either by placing an urgent order with the wholesaler or manufacturer or by getting them from a different pharmacy.

to check carefully for interactions

HIV medications and other kinds of drugs can influence each other. Those could be other prescription medicines, but also medicines that you can get without a prescription, alternative medicines, or party drugs such as XTC. It is advisable to tell other doctors about the HIV medications that you are taking. And it is a good idea to get all your medicines at the same pharmacy, if possible. That way, the pharmacy can check to make sure a doctor did not overlook the possibility that your different medicines could influence each other.

Some pharmacies always have the most common kinds of HIV medications in stock, are familiar with HIV and know how important privacy is for many people with HIV. There are also pharmacies that only keep HIV medications in stock if they have a customer who uses those medicines. And there are also pharmacies that never have HIV medicines in stock, so that you will always either need to go twice (once to deliver your prescription and once to pick up your medications) or let them know in advance that you will be coming to pick up your medicines. You can ask your pharmacy which case applies to them. You do not need permission from your insurance company to switch to a different pharmacy. A number of cooperating pharmacies (plusapotheken.nl; the site is in both English and Dutch) offer a series of additional services.

Doubts? Dissatisfied?
If you are unhappy with the care you are receiving from your internist, HIV nurse, family doctor (GP), pharmacy, dentist or other care providers, it is up to you to do something about it. Will you simply accept things the way they are, because you do not think it is so important? Or will you say something about it? If you do say something about it, you give

the other(s) a chance to explain their position and if necessary to respond better to your needs. You are always free to switch to a different internist, HIV nurse, family doctor (GP), pharmacy, dentist or any other caregiver. Usually you can find a different internist or HIV nurse within your same hospital. You might find it difficult to say that you want to switch, but it happens relatively often, so you will certainly not be the first one to do it. If you want to switch to a different internist but find it difficult to discuss it with the one you have now, you can tell your HIV nurse first.

Second opinion
You might have doubts about whether the treatment being proposed is really the best one for you. Or perhaps you simply want additional certainty about that. After all, it’s your life, so you could consider asking for a second opinion from a different doctor. You might find it difficult to talk about it, but the choice of the treatment is important enough to do that. A second opinion is covered by your basic health insurance policy, so you will not have to pay anything extra to get one.

Ask about other people's experiences
You can ask about how other people have experienced a particular internist. That way, you can get a sense of whether or not you will feel confident with him or her and if it will ‘click’ between you. You could ask people you know who have HIV about their experiences with their internist, for example. You can also call the Servicepunt of the Hiv Vereniging if you want to talk about your own experience with your doctor (020-689-2577- monday, tuesday and thursday from 2 PM till 10 PM). 

Contact

Hiv Vereniging Nederland

Eerste Helmersstraat 17

1054 CX AMSTERDAM

020 6 160 160

servicepunt@hivnet.org
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Servicepunt

020 689 25 77
servicepunt@hivnet.org


For questions about living with HIV. Available monday, tuesday and thursday from 2 PM till 10 PM

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