Experiences of antidepressants

Antidepressants: finding information

When people are prescribed an antidepressant for the first time they often want to know more about what to expect; how they might feel when they are taking them, how long it might take to work, how long they should expect to take it, about potential side effects, and what other treatments might be available. They may want to find out more information at different times, such as if the antidepressant doesn’t seem to be working, if they experience side effects, if they feel they want to stop taking it, or if their doctor changes their medicine.
 
Using the internet
 
In the past it was difficult for people to find information about the medicine they were prescribed other than from the patient information leaflet in the pack, but these days the internet is routinely used by people to look up health information. Most people we spoke to had used the internet to find information, including about symptoms before seeing the doctor, to find out more about depression and how it’s treated, about the medicines they were prescribed, about side effects, or to find out others’ experiences. Melanie said she had more or less ‘self-diagnosed’ using the internet. She decided to seek help from the GP after looking up her symptoms. ‘I’d done some research on the internet which got a medical breakdown of symptoms that you could expect to have if you were suffering from depression’ When Peter was prescribed fluoxetine he looked it up to find out more about it. ‘It took me a while to work out... you know, fluoxetine is Prozac I never knew that and then I found out oh right I’m on Prozac fair enough or the equivalent... just looking up a little bit see to if there are any side effects or things I should be worried about’. 
People we talked to had used a wide range of websites including NHS Direct, Patient.net, NHS Choices, and sites hosted by mental health charities such as MIND and Mental Health Foundation. Some people bookmarked sites if they had like the layout or felt they provided trustworthy information so that they could easily find them again. Others said they searched for information more broadly using a search engine such as Google. Melanie said, ‘I’m quite a technical person so, you know, I need information, it’s kind of, I need it in black & white so you know I‘ve looked up anxiety, I looked up stress, I’ve looked up ‘depression’ just sort of googled the word’. Greg said he compared information about the same topic on several different sites and that it was important to find reliable websites that gave trustworthy information. Some people used the internet to access published medical evidence about antidepressants or depression, but some said it can be difficult to make sense of this type of information. Lucy Y uses the internet with caution ’I’m reasonably medically literate, I go and do my own reading or else I’ll read papers on the issues, I want to know everything I can about what I’m facing but I’m also wary of falling foul of, you know… ‘Dr Google’, I don’t want to be seen as somebody who self-diagnosed on the internet’. People were aware that it could be difficult to know what information to trust or believe about antidepressants, as there are lots of differing opinions and perspectives, even amongst ‘experts’. 
Finding out others’ views and experiences of depression and treatment can also be helpful. Hearing about how other people cope, for example with side effects, may help people make decisions about their own treatment. Online forums, blogs and social networking sites all provide opportunities to share and learn from others’ experiences. 
Antidepressants affect people differently- Stuart said forums are sometimes dominated by people who have had a bad experience or who are overly negative, and it can be easy to feel confused or be misled by other people. Emily avoided them because she preferred not to hear certain opinions ‘I didn’t want to come across any comments about... how it ruins one’s life or how it’s... you know, all a fake... doesn’t actually do anything, it’s all in your head. I was a bit wary of seeing anything like that... so I said ‘right, ‘doctor says so... that’s enough for me’. Lucy Y was interested to hear about others’ experiences ‘but I like quite a high standard of written English and you don’t get that on forums’.
 
Other sources of information
 
Not everyone relies on the internet, some are happy with the patient information leaflet in the pack. Flora advised people to get as much information from different sources as possible. Sharing experiences face to face with other people, for example with friends or relatives, or attending support or therapeutic groups provide people with opportunities to talk to others who have had similar experiences. Thomas said people using mental health services often swapped stories at group therapy meetings or whilst waiting for an appointment, although this was not always positive because often people felt their doctors hadn’t given them enough information. People often wanted to know what medicines other people were taking or whether they had experienced side effects. Some people said speaking to work colleagues and ‘comparing notes’ had been helpful, or they had been referred to occupational health services who had offered support and information.
 
People talked about a range of other sources of information that they found helpful including, self- help and spiritual books, literature and novels about experiences of depression, printed leaflets or booklets, radio broadcasts or podcasts, magazine or news articles , medical books and articles or papers written in scientific journals. Jenny uses the British National Formulary (BNF) to check the different medicines she takes because she has other medical conditions and wants to make sure there are no contraindications if she is prescribed or given new medicines.
 
Media stories sometimes prompted people to find out more. Some said knew about Prozac (fluoxetine) because it had been hailed as a ‘happy pill’ when it first came out. Lou looked online for information about Seroxat (paroxetine) when she heard a news item about it. ‘I think there was some stuff in the news about people becoming suicidal when they were prescribed [Seroxat]... I do remember at the time this was going on reading that this particular antidepressant was sort of falling out of favour’. Stuart has built up a wealth of knowledge about treatment for depression over the years using books, media articles and through talking to health professionals or people who take antidepressants. He reads medical literature to find out more about the science surrounding antidepressants, and over the years since he was first prescribed an antidepressant has become better informed. He now does voluntary work giving talks about mental health to community events. Similarly Thomas uses his own experiences and the knowledge and information he has gained through having tried several different antidepressants, and now acts as a patient advocate helping others to find out the information they need. A couple of people worked in a mental health setting where they had used their own experience to help provide information to others.
 
Having a good relationship with the doctor is important. People usually appreciate being given proper explanations and information about their treatment by their doctor, and may feel unsupported if they feel there are things they haven’t been told. People are better placed to make decisions about their treatment if they are well informed. Doctors who give their patients time, who listen and provide plenty of information are highly valued. Doctors may direct their patients to useful websites, or give them printed information or leaflets to take away to read, but some people felt frustrated that they had not been given enough information. Information from the internet helped some to think about questions to ask during a consultation or review of their medicines. 
People sometimes worry about discussing information found on the internet with doctors. Clare remarked that ‘You can see in the GP’s faces, you know, when you say, “I’ve been on the internet” and you see them kind of glaze over going ‘oh God!’ but she said her GP was always happy to talk to her about anything. Others felt their doctor had been dismissive or hadn’t listened when they came to a consultation armed with information from the internet.
 
Thomas said his doctor was critical when he wanted to discuss information he had found from medical books and treated him as though he couldn’t possibly understand what he had read. In his work as an advocate for users of mental health services he says often people think it should be their doctor’s responsibility to give them information, but he encourages them to take responsibility for themselves.
Other sources of information about antidepressants included the CPN (Community Psychiatric Nurse), psychiatrist, and therapist or counsellor. Confusingly, different health professionals sometimes seemed to give conflicting information. Collette thought it helped when health professionals had experience of mental health issues themselves, either through special training, or personal experience. The pharmacist can also be a useful source of information and support as he or she has specialist knowledge about medicines.
While depression is a common diagnosis and some GP’s have a special interest in mental health issues, some of the people we spoke to had doubts about the extent of their GP’s knowledge. Some felt doctors avoided giving their patients certain information or downplayed potential side effects. People sometimes said they would prefer their doctor to give them information about other treatment options rather than just prescribe antidepressants; they wanted to know about therapeutic support, alternative or complimentary medicines, or other strategies to combat depression. 
It can be difficult to take in a lot of information and people with depression may not have the energy or motivation to do their own research. Melanie usually reads a lot but said, ‘I haven’t got very much concentration at the moment I couldn’t sit and read article after article.’ People may not want to feel overloaded with information and prefer to avoid looking things up because it can be worrying or even frightening. Rachel said just reading the leaflet that comes with the medicine can be frightening because of the long list of side effects. Finding out information about medicines or symptoms is not a priority for some people. Steve has never felt he needed to look up information or find out more about the antidepressant he takes, and just doesn’t think about it. Caroline was happy to take the advice of her doctor and did not feel she needed further information other than knowing that it helps her to feel well. (See also our section on Experiences with health professionals).

Last reviewed June 2016.
​Last updated June 2016.

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