We talked to people who had had their condition all their lives and others who were diagnosed as a child or teenager. So some people had learnt about their condition gradually, as they grew up, mainly through their parents, doctors and nurses. People who were diagnosed when they were older sometimes already knew something about an illness because another family member or a school friend had it too, or if it was a relatively well-known condition such as asthma. 

When you are diagnosed with a disease that may affect you for years to come there are many questions you may want answered. It can be particularly difficult to take in all the necessary facts (what it is, how it will affect your life, what the different treatments are etc.) if you are shocked by the diagnosis or know little about the condition. People sometimes avoid information at this time because they hope that the condition will go away if they ignore it. 

She lacked basic information about epilepsy and its treatment. It was only when a new doctor changed her medication that she found out more.

Several young people said that they wished they had been given leaflets, phone numbers or web site addresses to guide them, especially during the early weeks. The information you need often changes as you try different treatments (see 'Finding the right medication') or as you get older (see 'Contraception and pregnancy'). 

Has had information from the hospital, the Arthritis Research campaign and the internet. Thinks the resources that exist need to be better publicised.

Thinks that people should be given written information when they are diagnosed and also have opportunities to get more information as they grow older.

Doctors and nurses provided a lot of information and were usually willing to answer questions - though it was sometimes hard to know what exactly to ask. A young woman said that knowing that she could call her specialist diabetes nurse was very reassuring and a young man said that his doctor told him everything he needed to know. Another said that doctors need to be patient with teenagers who may act as if they know everything but really need time to absorb new information before they can ask appropriate questions. A person with sickle cell disease said that doctors might be a good source of information, but that sometimes she didn't necessarily listen to them. People who had lived with their illness all their lives said that doctors sometimes wrongly assume they know all about it. They need a chance to ask questions without feeling foolish. 

Some genetic conditions - like sickle cell disease and cystic fibrosis - had been referred to in young people's science lessons at school. A young man with HIV said that the sexual health information he had been given at school was all about biology and pregnancy - and as a result he knew too little about the broader aspects of sexual health. 

Says that young people should know where sexual health (GUM) clinics are and what they need to do to avoid sexually transmitted diseases.

Parents are usually a major source of information, although people tend to want to find out things for themselves as they get older. Some parents got involved in voluntary groups and fund raising - one even researched and wrote a book about her child's condition. Parents, children, teenagers and young people often want to know different things about the condition so some organisations have different sections for each. 

People often sought out additional information on the internet, in books and through the national voluntary organisations associated with their condition. Some wanted facts and figures; others prefer to hear about other people's experiences. Many people immediately looked on the internet for health information and support. They also used chat rooms, email and My Space. 

Her mum found an internet group for young people with ME. She felt scared to ask the GP for information and feels that her GP had no idea what to tell her.

It can be very reassuring to hear that others have had similar experiences - whether they are positive or negative. Her GP has emailed her with articles from the internet.

Some warned that even though the web contains masses of fascinating information you need to be careful to use reputable sites. One young woman pointed out that some sites are just trying to sell dubious treatments. She said “ a lot of it is trying to sell you a specific course of treatment that is going to, what was it? 'decrease your scoliosis curve by half'. It will also decrease your bank balance quite a lot because it's so expensive.”

Sometimes information can be scary - especially if there is a reduced life expectancy associated with the condition. A person with sickle cell disease told us that she had stumbled on a website which contained depressing facts and decided not to look at the web again.

Originally learnt about sickle cell disease from her mother. She has looked for information on the internet but was upset to find negative information so has avoided it since.

When she was a teenager a doctor blurted out bad news about her life expectancy. Did not want to upset her mum but found talking to others with CF reassuring.

People do not always want a lot of health information - some told us that they preferred to concentrate on other things and not feel that they were being defined by their condition. There is more to life than illness and it could be boring to think about it too much.

"The Government will promote the development of self-management programmes for children and young people being delivered through the voluntary sector and social enterprise, and will encourage local areas to assess how self-management programmes can be made available to their local communities." (6.45)

Last reviewed April 2010.

Last updated April 2010.