Growing up, gaining independence: families

This section explains about Growing Up, Gaining Independence, a framework we use at Great Ormond Street Hospital (GOSH) to encourage and support young people to become as independent as they can with their healthcare.

This section is for families.

Working with the GOSH Young People’s Forum, families and healthcare professionals, we identified a number of key life-skills that enable young people to be involved in their healthcare and will empower them to take responsibility for their future health.

Young people told us they value spending time on their own with their healthcare team. They said that they sometimes have questions but are too embarrassed to ask them with their parents in the room. We know they are also more likely to be honest about such things as whether they sometimes forget to take any medicines.

Remember – everything your child says in the appointment on their own is kept confidential unless we are concerned for their safety.

We have learned it is much easier for us to find out what young people really know about their illness, disability or treatment if we see them on their own. We can find out how their illness or disability affects the things that are really important to them and if there are things they feel they can’t do where we could help them.

Young people legally become responsible for things relating to their healthcare once they are 16. For example, there are changes to who can consent for any treatment, who should receive any letters that are sent regarding their health, who can make appointments for them, and who can call for the results of any tests.

These changes are explained briefly below. Special rules apply if the doctors think, for any reason, that a young person is not able to make decisions on their own.

• Consent – Legally, once they are 16, your child should be the main decision maker for any treatment. They do not have to make decisions about any treatment on their own – you, their doctors and nurses and anyone else who usually supports them would be able to help as they have always done. If you and your child disagree, there are people at GOSH who can help.
  
• Hospital communications – After their 16th birthday health communications such as clinic or discharge letters should be addressed to your child. We will ask them if they want you to carry on receiving letters as well. If they lack the capacity to agree to your receiving copies of letters they will continue to be sent to the person or people with ‘parental responsibility’.
  
• Making appointments – Your child should be the one to make or change the date or time of any of appointments, unless they have given permission for you to do so.
  
• Benefits – You might be receiving a Disability Living Allowance (DLA) payment to help with any additional costs of caring for your child. When they are 16 they will need to be reassessed to see if they qualify for a different payment called a Personal Independence Payment (PIP). The Department for Work and Pensions (DWP) will contact you before their 16th birthday to explain how to claim for a PIP.
  Details are available at the Contact for families with disabled children website or from your local Citizens Advice Bureau (CAB).

As well as legal and financial changes, there are other things you should start thinking about.

• Record keeping – Once they are 16, clinic letters should be sent directly to your child. You will only receive copies of letters if they have given their permission for this to happen. To prepare for this it is a good idea to teach them how to check that the information in a letter confirming an appointment or after a clinic is correct. You could show them how and where you keep their health records and support them to manage them for themselves.
  Some people take a photo of any 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.
  
• Knowing about their medical history – Many young people have little idea of their medical history. It is a good idea for them to keep a record of what immunisations they have had and when they had them. They should also know if and when they had any infectious diseases, operations or accidents when they were younger, and if someone in their family has a medical condition or illness, especially one that needs treatment.
  If you are unsure your family doctor (GP) should be able to help fill in any gaps. They may need this information if they apply for a job or go to university.
  
• Appointments – Some young people told us that they rely on their parents to make appointments for them. Knowing how to make appointments, fit them in around holidays, exams and work, and how to keep track of them are important skills that everyone should learn. They will also need to know who to contact in case they have to make, change or cancel any appointments.

The age that children’s health services finish and adult health services start varies depending where people live. In some areas, adult services start at 16 years and in others they start at 18 years. It is a good idea to find out what age this happens where you live. If your child became unwell or had an accident and needed to go to hospital they might be admitted to a children’s or an adult ward depending on where you live. Your local General Practice (GP) clinic would be able to help you with this.

See our information page for families about decision-making when your child is unable to make decisions for themselves once they are 16.

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