Information for parents

 

Moving from paediatric services to the adult sector can be an apprehensive time for patients and their families, which is why the adult team like to meet you before the care of your child is moved to the adult service.  This usually happens at the Transition clinic which takes place at the Royal Hospital for Children in Glasgow.  The cardiology consultant who normally reviews your child can refer you to this clinic which is run by a cardiologist and a nurse from the adult team.

 

During the clinic your child will get an Echocardiogram and an ECG and the doctor will talk to you all about the results of these tests. You will find that the doctor will start to direct the conversation more towards your child, which can be a strange experience for you as parents. 

 

The teenage years are a period of many changes and they will be starting to think about their future and will be making important lifestyle decisions.  In order to help them to make informed choices about their health they will be given information about their heart condition and health education at their clinic visit (see lifestyle page).   Once they turn 16 years old, they will be asked to sign consent forms rather than yourselves so it is important that they start to learn more about their heart condition.  Once a patient turns 16 years old, health care professionals need to gain their consent before they speak to anyone else about their health.  It is therefore their choice who or if they bring a family member with them to adult clinic appointments.   We do encourage all patients to bring someone with them to all clinic appointments and acknowledge the vital role that parents and family members continue to have in the care of a young adult. 

 

Before you leave the clinic appointment a plan is made about where your child  will be seen next. For some patients and families they would rather continue under the paediatric team for a bit longer, but other patients are ready to move across to an adult hospital.  This a joint decision between you, your child and the medical team. 

 

Follow up care for many patients it is simply a matter of carrying out some investigations (ECG, Echo and occasionally MRI or exercise tests) and having a routine review, however, if things do start to change with your child’s heart we may need to consider other treatment options.  Future heart surgery or intervention will take place at the Golden Jubilee National Hospital; however, follow up care is usually shared between a local cardiology team and the National service at the Golden Jubilee.  Regardless of where your child is being seen you can always contact the Nurse Practitioners who work at the Golden Jubilee Hospital (see contact details).  The nursing team is available for advice, support but can also be contacted if there is a change in your child’s symptoms or life circumstances that might be relevant to their health (for example, planning a family or going travelling).

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