Long term health conditions

Talking to doctors and nurses

Many of the young people with chronic (long-term) conditions had a great deal of experience dealing with health professionals and clear ideas about how communication could be improved. For instance, they preferred to be asked 'How are you?' rather than 'How is your epilepsy?' or your arthritis, etc., when they went to see their doctor. They also disliked it if the consultant seemed to be in a rush or spent the appointment reading their medical notes to them (which often happened if they were seeing a doctor they didn't know). (Also see 'Getting on with your health care team'.)

Most of the young people we interviewed said that they wanted honesty and straight-talking from their doctors about their prognosis, treatments and the risks involved in the medical procedures. They think that it is important for the doctor to avoid medical language and explain things using simply terms. One young woman said that her consultant was vague about her prognosis and that there was a lack of clear information and advice. A sixteen year old said that he doesn't understand when his consultant talks about 'mild abrasions' and that the consultant seems to always talk to his mother rather than to him. 

Several young people found it rude and annoying when consultants talk about them - the patient - in front of them as if they were not there. One young woman remembers that, in the children's clinic, her consultant used to ask her mother 'How are Lizzie's bowel movements?' when she was sitting there right in front of him. A young man said that his consultant doesn't like to give him bad news and so he waits until there is also some good news and gives them both together. Some young people said that, as teenagers, they were ignored by their consultants because they only talked to their parents. This made it difficult for the young person to ask questions about issues that were worrying them at the time - like drinking alcohol, side effects of medication, prognosis (future outlook for their condition) etc. Other young people had more positive experiences and said that their consultants do ask about what is going on in their lives and take a keen interest in their school or sport life. They said that consultants used this approach to engage more with the teenagers themselves. 

Some young people have found it helpful to write down questions in a notebook in between appointments to make sure they won't forget when they see their consultant. Many have found it useful to bring a parent with them when seeing the doctor because parents could then ask the questions that they might not have thought to ask themselves. 

People who were told that they could text or phone their doctors and nurses if they had any questions said that this made them feel much more secure. (Also see 'Getting on with your health care team' - for examples of good relationships between young people and their teams).

Getting treatment from the GP 

Several young people we talked to said that they've developed a better and more personal relationship with their GP's than with the hospital staff. In hospital they found it hard to deal with bossy or insensitive consultants. They found their GP's easier to talk to about their emotions and problems to do with family and relationships. One young woman however, says that it's difficult to go to see a GP on your own because they don't pay attention to what you are saying. Another problem that several young people referred to was that receptionists are sometimes unhelpful and make it difficult for them to talk to their GP or get an appointment at short notice. 

The young people we talked to with asthma pointed out that their GP's had always been very supportive and had been good at providing general advice but that it's the role of the asthma nurse to give specialised and detailed information about their condition. They find GP's good at helping them to deal with sudden changes in their symptoms (due to colds and flu, allergic reactions, etc.) while a nurse helps them with the information and advice for the long term control of their condition.

With the exception of young people with asthma most of the other young people we spoke to said that they don't see their GP for anything to do with their condition. They see their hospital team for that. One young man with ME/CFS made the point that  it's difficult for both doctor and patient to establish good rapport because there's no treatment for their condition. One young woman, also with ME/CFS, found that it was difficult to establish a relationship with her GP because she didn't have any knowledge of what was happening to her, so was unable to talk about it in a clear way.

A few young people prefer to avoid going to A&E departments because, in their experience, the staff there don't really understand their condition or the treatment they're following. It could be tiring for people, having to explain things to do with their health condition and treatment particularly to those not directly involved in their care. 


Last reviewed July 2017.
Last updated February 2012.

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