Many of the young people with chronic conditions had had a great deal of experience dealing with health professionals and had 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 an unfamiliar doctor). (Also see 'Getting on with your health care team'.)

She talks about the things she dislikes when she goes to see her consultant. But says that her epilepsy nurse is 'brilliant' and has given her lots of encouragement and support.

Most young people say 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 does not understand when his consultant talks about 'mild abrasions' and that in any case the consultant seems to always talk to his mother rather than to him. 

Newly qualified doctor want to show off what they have learned by using long and complicated medical words but his consultant is 'really nice' and talks to him in a clear way.

He does not always understands what the consultant is saying when talking to his mum during the consultation but afterwards his mother explains things to him.

Says that doctor's language is 'over the top' and thinks that some can be insensitive and impersonal.

He has seen doctors and nurses for so many years now that he understands a lot of the medical terminology and if he doesn't he asks them to translate things into English.

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 does not 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. Such a situation made it difficult for the young person themself to ask questions about issues that were worrying them at the time - like drinking alcohol, side effects of medication, prognosis 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 consult ants used this approach to engage more with the teenagers themselves. 

She divides consultants between the authoritarian and the dismissive types. She prefers her GP because she can talk to him on a more personal and intimate level.

She was diagnosed age 15 and found doctors talking to her mother instead of her. She would have appreciated more opportunities to ask questions.

Consultants have talked to him since he was 13 years old. He said that they ask about his sport life (plays rugby) and used it to explain about his asthma.

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. 

She is 22 years old and finds it useful to take her parents along to the consultation because she says it is easy to forget to ask all the questions you want answers for.

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 have 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 is difficult to go to see a GP on your own because they do not pay attention to what you are saying. Another problem that several young people referred to was that receptionist sometimes are unhelpful and make it difficult for them to talk to their GP or get an appointment at short notice. 

She feel very well supported by her GP but receptionists can be a problem when she needs to see or talk to him. She has learned to be persistent without getting angry with them.

The GP ignored her when she was talking about a new treatment. She found it rude and felt angry. She wants more information from health professionals not just from the Internet.

The young people with asthma pointed out that their GP's had always been very supportive and had been good at providing general advise but that it is the role of the asthma nurse to give specialise 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 advise for the long term control of their condition.

Thinks that GPs and nurses have different roles when it comes to help her with the long-term and everyday control of her asthma and its symptoms.

With the exception of young people with asthma most other young people said that they do not see their GP for anything to do with their condition. They see their hospital team for that. One young man with ME made the point that - it is difficult for both doctor and patient to established good rapport because there is no treatment for their condition. One young woman, also with ME, 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 and hence was unable to talk about it in a clear way.

Says that doctor-patient relationship is difficult because doctors are used to treating your illness but in terms of ME it's not the case and to recommend rest is just not enough.

A few young people prefer, if possible, to avoid going to A&E departments because, in their experience, the staff there do not really understand their condition or the treatment they are following and is tiring having to explain things to do with your condition and treatment to others particular those not directly involved in your care. 

Her diabetes and cystic fibrosis require a very specific treatment. She finds that apart from her medical teams other doctors find it difficult to understand this.

Last reviewed April 2010.

Last updated April 2010.