Growing up, gaining independence: young people

At Great Ormond Street Hospital (GOSH) we want to encourage and support you to gradually become as independent with your healthcare as you can. We also want to make you aware of the legal changes that will affect you after your 16th birthday so that you have time to prepare.

We have worked with the GOSH Young People’s Forum, parents and health professionals to make sure we have identified the important things you should know about. Once you have started secondary school is a good time to start thinking about some of the skills and knowledge you will need to manage your future health. Young people told us how important it is to have time to learn, practise new skills, and gradually take on more responsibility.

You could think about spending some time alone with your doctor or nurse-other people told us how useful they find it. It gives you the chance to talk about the things that matter most to you, ask your own questions and get to know the doctor or nurse better. You could start by spending just a few minutes on your own either at the beginning or the end of your appointment.

You should not feel that any question is too silly or too embarrassing– if you want to know something, just ask. If you do not understand all of the answers ask them to explain again. We don’t want you to leave an appointment with questions you wish you had asked or answers that you did not understand.

What you say to a healthcare professional is private and stays private. It can only be shared with other healthcare professionals if it is relevant to your care or if they are worried you are at risk in some way. They will have to share what you say if they think you are at risk of harm or are in danger so that they can help you and keep you safe. They will tell you if they are going to do this and explain who they will tell and why. They do not have to tell your parents what you have said in an appointment and would only do this with your permission. If there is something they think your parents should know about–for example if you are struggling with your treatment- they will talk to you about this. If there is something you are finding difficult to share with your parents they could help you with this as well if you want.

Your 16th birthday may seem a long way off but there are important legal changes relating to your health that happen then. We need to make you aware of them so that you have plenty of time to get ready.

Consent – After your 16th birthday you will be the one asked to decide about treatments or operations. This will sometimes involve signing a Consent Form. There’s no need to do this on your own – you can still discuss your options with your family, doctors or nurses. There are special rules that apply if the doctors think someone cannot understand information well enough to make a decision on their own.

Hospital communications – Once you are 16 years old, communications about your health should be addressed to you. This includes appointment letters, discharge summaries, clinic letters and test results. You can decide who can receive copies of letters or look at your medical notes after this age too.

Arranging appointments – You will be expected to make appointments for yourself after you are 16. Your parents will only be able to make, cancel or change your appointments if you have given the hospital permission for them to.
Knowing what to say, how to fit appointments in around holidays, exams and work, and how to keep track of them are important skills that everyone should learn. You will also need to know who to contact about an appointment in case you have to make, change or cancel it, or if you are running late – you could keep the details in your phone.

Your parents can explain how they make appointments and keep track of dates. You could keep your own record of important dates such as holidays and appointments on the calendar on your phone.

Record-keeping –Once you are 16, health-related letters will start coming to you. You should keep copies of your clinic letters, as well as discharge summaries and test results. Remember that you might want to keep them somewhere private if you don’t want other people to be able to see what is in them.
Talk to your family about what they do with the letters they receive – how and where they file them, how they check the details in the letters are right, and what they do if something is not clear.

Some people take a photo of letters and keep them in a secure folder on their phone so that they always have access to them. There are also apps available that allow you to securely store health information on a mobile or tablet.

Medical history – People often have some idea of their medical history but not in any detail. It is a good idea to find out and keep a record of:

• what immunisations you have had and when you had them
• when you had any infectious diseases
• if you have had any operations or accidents when you were younger
• if someone in your family has a medical condition or illness, especially one that needs treatment.

Talk to your family about this. Your family doctor (GP) should be able to fill in any gaps. Think about how you will keep this record – you may need it when you apply for a job or if you go to university.

Benefits – If your family receives Disabled Living Allowance (DLA) on your behalf you may need to be re-assessed after you are 16 to see if you qualify for a Personal Independence Payment (PIP) instead. 
Details are available at the Contact for families with disabled children website or from your local Citizens Advice Bureau (CAB).

Understanding your local health services

The age at which young people start attending adolescent or adult health services varies from area to area – in some places adult services start at 16 but in others at 18.

Ask your family doctor’s practice what happens in your local area. It is useful to know in advance whether you are likely to be seen in a children’s department or an adult one if you need an appointment.

Access oureasy to read information sheets which cover all aspects of 'Growing up, gaining independence'.