Some of the young people we talked to have lived with their condition all their lives while others were diagnosed as a child or as a teenager. Most of them had a great deal of experience of using the National Health Service. Some have attended children's clinics as well as adult clinics, and a smaller number have used adolescent clinics. In this section young people talked about their experiences in different clinics, their concerns and what needs to be improved. They also offer advice to medical teams about what to expect when treating adolescents.

Most young people said that their clinic team knew them well and talked to them about their lives in general and not just their specific condition. Some said that they are on friendly terms with the staff and this makes them feel more confident. It was clear that some medical staff really make an effort to understand what it feels like to be a teenager living with a chronic condition (see also 'Dealing with feelings and emotions'). Young people who said they were unhappy with a clinic usually described a bad experience with a particular member of staff, or complained that the consultant speaks to their parents, not to them. (Also see 'Talking to doctors and nurses' and 'Getting on with your health care team'.)

Her first children's consultant talked to her mother and not to her. Her adult consultant is nice but she finds the physical environment old and depressing.

Children's clinics

Several young people who were still attending children's clinics said that they were happy with their care. Some said they did not feel ready to move on, or were ambivalent about the prospect of leaving the children's clinic. They liked the informality and friendliness of the staff and didn't want to change to the adult clinic. The children's clinic was a good place to meet and befriend other children with similar conditions and talk to them about issues to do with their condition. Many young people told us that it is quite scary learning to talk to medical staff and finding out about treatment and medication. Often it was their parents who dealt with the health professionals and organised the treatment. 

As they got older some felt it really was time to move on to an adult clinic where there would not be small children running around and not so many bright colours! It could still be a difficult break to make though and, as a result, some young people  greatly appreciated being able to stay in touch with their old consultant after they transferred to an adult clinic.

Felt ambivalent about being transferred to the adult clinic at the age of fifteen. Found it a scary experience but liked feeling more grown up.

Contrasts being at adult and adolescent clinics. Developed a good relationship with his team. Seeing other young people with arthritis helped him feel less of an oddity.

In the adult clinic you are in control and it is a quicker and more relaxed service than in the children's clinic but he misses meeting other young people with arthritis.

Moving from the children's to adult clinics

Some young people said that their experience of transition from the children's to the adult clinic had been very good. If their children's consultant established a good rapport with them and not just with their parents they grew accustomed to dealing with medical staff and asking questions. Those who were slowly introduced to the adult's clinics got to know their new consultant and other members of the team but were also able to go to their children's clinic until they were ready for the change. One young woman with cystic fibrosis explained that her transition process started when she was sixteen and did not complete till after she was nineteen years of age. She said 'I'd grown so attached to them, and it is quite hard and so, I didn't want to fly away from the nest'. Several young people said that the adult clinic was less formal and better in the sense that they feel more control over their condition and treatment. 

Nurses from the adult clinic visited her at her paediatric clinic and at home before she transferred. Is now really happy with the care at the adult cystic fibrosis clinic.

She felt ill-prepared for what would happen at the adult clinic, and was especially shocked at the lack of privacy for lung-function tests. She was initially reluctant to go back.

Several young people said that medical staff need to understand that for young people the transition from child to adult clinic is not just about 'medical' matters. As teenagers grow up they start to need information and advice about education, relationships and sex. They stressed the need for staff to be prepared to address these issues in an appropriate and sensitive manner. One young man interviewed has been very involved in training medical professionals on how to relate to young people. A young woman said that the transition from the children's to the adult clinic has been one of the biggest problems she has had to face. Some clinics have staff (sometimes a nurse or social worker) who talks to them about teenage issues. One girl said that her clinic asked her to fill in a questionnaire about family relationships, education, sex and so forth.

His gradual transfer built up his confidence. Suggests what needs to be done to make sure that young people have a successful transition from the children to the adult services.

She was unprepared for her transition and found it hard. As a teenager there were other things going on in her life and says that medical staff need to help you cope.

The different way that adult clinics were organised was confusing for some people, especially if they had not been prepared for it. One young person wondered why they always seem to have to wait for over an hour at adult clinics.

Hospital wards and young people

Many of the young people we talked to have had to spend time in hospital for treatments or when feeling ill. When they were under sixteen most said that their hospital stays were usually good and that the nurses are 'brilliant' and very friendly. But many said that when they are over sixteen they have been placed in adult hospital wards and found that experience depressing and even frightening. Young people who had been in adult wards felt very strongly that there is a need to create 'young people's' wards where they could be amongst other people their own age and feel better cared for and more protected. (Also see 'Surgery and hospital treatment'.) 

Being on an adult ward was like being put in 'an old people's home'. She says that staff do not always listen to her and she would like to see special wards for young people.

Children's wards feel safer and nurses are more supportive than in adult wards. His bed, in an adult ward, was next to someone he felt very uncomfortable with.

Department for Education

Last reviewed April 2010.

Last updated April 2010.