It is important that teenagers understand their condition and recognise the signs when medical intervention is necessary
Between the ages of 10 and 15 you will become more independent and will be expected to take charge of routine treatments, managing problems and learning independence. This will then help you to equip yourself with the skills to manage adult life and fully enjoy activities such as employment, going away to college or living with a partner.
This process is known as ‘transition’ in the medical world and should happen over a number of years and in that time, several things need to occur. The paediatric team should outline what the timetable of transition involves, including when the last paediatric clinic or admission will take place. This is usually between the ages of 16-18 years, but varies in different hospitals. Teenagers should be encouraged to participate in their care from an early age – for instance, they start to see the team members in clinic on their own for the first part of the consultation. They should be involved in all decisions about treatment.
Information about the adult centre will be available through the paediatric service. The adult team will be able to answer questions about the things that may be causing worry, for instance who will flush a port; how are home IV antibiotics organised? The paediatric team should prepare a ‘transition document’ for the adult team about each young person, summarising important clinical details. The individual concerned should also be able to make their own contribution to this document, about issues they feel are important to their ongoing care.
The option of seeing an adult respiratory physician at a local district general hospital may appear more attractive than travelling to a specialist PCD hospital, especially if paediatric care has been received locally at a shared care clinic. It is unlikely, however, that the local consultant will have the experience of the full range of current PCD care and treatment. It is also unlikely that the local district general hospital will have a full multidisciplinary team that can provide the specialist nursing, ENT and physiotherapy input that is essential to deliver proper and safe PCD care.
It is important that the teenager understands as much as possible about their condition and recognises the signs when medical intervention (normally in the form of antibiotic treatment) is necessary. It is also important that as you grow more independent and spend less time with your parents/guardians that the people you are spending time with are aware of your condition. If not, then for safety purposes it is recommended that you wear a medicalert bracelet. This allows any medical team to have access to your current medical information when you may not be able to tell them.
For more information about the bracelet click on this link: www.medicalert.org.uk