First step forward

In the video, Kendal talks about the Transition planning paperwork. You can email transition@somerset.nhs.uk to receive a copy for you to use.

Most young people with a long-term health condition(s) will move from children’s (you may hear this called paediatric) to the adult health services around the age of 18. The process of getting ready for the move is called transition and start at the age of 14.

Throughout the process the aim is to give you the confidence to be able to manage your healthcare as independently as you can.

Understanding your health condition(s) and knowing how best to manage it will:

• keep you as well as possible, helping you get on with the things that are important to you
• help you explain your health condition(s) to others
• help you ask for support from people you trust

We want to support you in learning about and managing your condition(s). We welcome any questions you might have and are always happy to talk through with you any aspect of your health.

Your body and health are continually changing and developing. So is medicine and the treatments which will suit you best. We want to encourage you to keep asking questions so you become confident that you are able to get the right care and support you need.

From the age of 16 healthcare professionals will ask you to make decisions about your treatment, when before it was just up to the adults. If you want help from adults to make treatment decisions, they can still help you.

To help you learn about and understand your medical condition(s) you might find it helpful to complete the table on the next page.

Some medical professionals may ask you to use a planning transition document called “Ready, Steady, Go”. If not use the Somerset Transition planning paperwork to help you plan the next steps for you. You can email transition@somerset.nhs.uk to receive a copy for you to use.

The choices we make affect our health. You will have more and more freedom to make choices about how you live your life. Some of these lifestyle choices include:

• exercise
• diet
• drugs, alcohol, smoking and vaping
• sexual health
• sleep
• cosmetic procedures (such as piercings, tattoos or body modifications)

Most lifestyle choices will not interact with your health condition(s), but some will. When they do it may affect you quickly or it may affect you a lot later. It is important you know this so you can make the right choices for you.

Your health is a private matter to you. You do not need to share information about your health condition with other people.

However, it can be helpful to you if you do share information about your health condition(s).

You can decide who, what and when you tell other people. They may ask how they can help you, so you could tell them:

• what they can do to help you stay well
• what they can do if you become unwell
• what not to do

If you find it hard to tell people face to face about your health condition you could:

• message them
• give permission for someone else to tell them for you

Very rarely are people unkind about health matters, but if that does happen talk to someone you trust about it.

At the age of 18 there are a few times when you really do need to tell others about certain health conditions. These times include:

• driving
• starting a job which maybe impact your health or your ability to do the job safely
• getting insurance

Talk to a health professional about this as it is only needed for certain health conditions and certain situations.

If you go to a specialist children’s hospital for instance Bristol Royal Hospital for Children, you may be discharged at 16 not 18.

You may still need to go to a specialist hospital for certain conditions as the condition may not be treatable at Somerset Foundation Trust.

Although we know you and your parents will probably have become experts in your health condition, before you are discharged from a specialist hospital, there are some things to consider.

Ask the specialist if you need ongoing support

If you don’t need ongoing support, you should ask what the important symptoms (sometimes called red flags) are for your health condition. These will mean you need to get medical help.

• If you do need ongoing support, who will you be referred to?
• You may be referred back to your GP who can discuss the most appropriate next steps.
• You may also find support groups and organisations around the condition helpful. Visit the Contact website for a list of support groups.

You will be making more and more choices as you move into adulthood. It is important to feel confident to ask questions and to make your wishes known to others. This includes the health and care staff who support you.

Learning to advocate for yourself, meaning speaking up for yourself rather than relying on others, can take time to get used to. The adults in your life will help you learn the skill of advocating for yourself.

First the healthcare professionals will speak directly to you in appointments, even if your adult is with you. When you are ready they may ask to speak to you on your own for all or part of the appointment.

You will gain confidence in this by asking and answering questions.

‘Ask 3 questions’

A good way to start is by using the ‘Ask 3 questions’ method. These are common questions which will give you a better understanding, which will allow you to make informed choices about next steps.

1. What are the treatment options?
2. What is good and bad about each choice?
3. How do I get support for me to decide about what is right for me?

Writing your questions down before an appointment can help you to remember what you wanted to ask. You could give the doctor or nurse the list of written questions if you feel nervous about talking.

Healthcare professionals have to get your consent for any procedures from the age of 16 and in some cases before that age. When you give consent you are saying that you are ok with them doing the procedure. You will need to understand what the procedure is and what it means.

What if I still want someone with me?

You are always able to have someone with you in appointments if you want, no matter your age.

If you want support from another person to help you express your views, you can choose anyone you trust.

If you want, you could have an independent person that you don’t already know. These are called professional advocates.

SWAN (Southwest Advocacy Network) has trained people who can help. Visit the SWAN website for more information.

What if I cannot give consent?

When a person is unable to consent to their treatment or they need someone to make these decisions for them they need to apply for this legally. Please see our Other matters page.