Process of Transition

This page covers:
– Transition
– Differences between children’s and adults’ health services
– Stages of transition
– Learn about your condition
– Becoming independent
– Knowing about services and supports in children’s and adults’ health services
– Looking after health equipment
– Managing appointments
– Meeting new health professionals
– Staying healthy
– Self-advocacy
– Developing a relationship with your GP
– Finding a new GP

Transition

Transition is the process of planning, preparing and moving from a children’s health care service to an adult health care service. The aim of transition is to help you become more independent and responsible for your own health care before you move from children’s services.

Young people with cerebral palsy will transfer from children’s services to adult health care services at some stage. Moving away from a team of health professionals that you have been with for many years can be scary but hopefully, by getting involved in the transition process you will feel more confident and happier about the move.

Transition is a gradual process, not a single event. Transition is about making plans with you, not about you. Transition should involve you, your parents or guardians, your healthcare teams, GP and others involved in your care. It is important to start the transition process early so that you will develop the knowledge and skills to manage your own health care as an adult.

While reading this information remember that everyone has a different health and life journey. So having one way of preparing for transfer to adult care is not the best way for everyone. Transition will look different for each young person and family depending on their abilities and needs. Some young people will be mainly concerned with moving on to adult health or community services. Other young people will need support from health services, social care services and special education.

Different services might have different policies or approaches to transition. It’s important to talk to health professional(s) in each service you attend about transition. If your health professional(s) does not start talking to you about transition when you are ready to, it’s a good idea to ask them about it. You can use the information below and checklists to start asking questions.

Transition is also a time of change for parents/guardians, as their young person becomes more independent. View transition as an opportunity to be pro-active about planning for this change in roles. The information on this page will be useful for parents as well as young people. However, we have additionally created a page with specific advice for parents.

Differences between children’s and adults’ health services

There are lots of different services that can help you with your health, employment and lifestyle. However, these adult services are different from when you were a child. As a child, many of your health professionals may have been in one place. In adult health care, your health professionals will likely be at different locations and not organised as one team. You will no longer have a paediatrician who co-ordinates your care. As an adult, you will probably not have a doctor or other health professional who you regularly see about your cerebral palsy. If you notice any changes in your condition or any problems such as pain, it will be your responsibility to seek advice from your GP. Your GP may then refer you to a relevant health professional such as a medical specialist or surgeon, a physiotherapist or an occupational therapist.

Importantly, when you see a doctor or health professional as an adult, you are the focus and you can legally make your own decisions. Even if you do not change doctors (e.g., you may not change your GP), you will transfer to an adult approach with your doctor and will be expected to manage your own health care. Doctors and other health professionals will talk to you directly, not your parents or guardians. Your parents and guardians may be allowed to attend appointments with you, but only if you give them permission. Your parents will not have access to your health information without your consent. This might be daunting for some people, which is why it’s important to prepare for it. Some people also look forward to it because you become more independent and can make your own choices.

Importantly, when you see a doctor or health professional as an adult, you are the focus and you can legally make your own decisions.

When you leave children’s services, you will be expected to:
– Talk to health professionals during appointments
– Make appointments to see health professionals
– Cancel appointments if necessary
– Arrange transport to appointments
– Take medication
– Fill prescriptions at the pharmacy
– Set goals for what you want to achieve
– Be motivated and take action to stay healthy and well
– Know your main health professionals and their role in managing your health
– Know when and how to access help
– Speak up about what you want
– Know about your cerebral palsy, medical history, medication and other treatments, and equipment

This often means having to learn new skills. Planning ahead, practicing and participating in your health care from an early age can help make the move to adult services easier.

Although you will be responsible for managing your health care, you don’t have to do this alone even as an adult. You may have parents, other family, friends, and others who help you make decisions about your health now. As an adult, these people can still help you, and there may be other people you want to ask for help at different stages in your life.

It can often be difficult to break the link with the children’s team that you have been used to seeing. Your natural instinct might be to ring them if you have a query. However, once you move on to an adult team or your GP, it is important for you (and your parent(s)/guardian(s)) to discuss any worries or questions with your GP and/or new health care team.

Stages of transition

During transition, you should start to:
– learning more about your cerebral palsy
– get more involved in your health care
– start making decisions about your health care,
– think about how you can take care of your health as an adult
– and start learning how to advocate for yourself.

This will help prepare you to be responsible for managing your health care as an adult.

It may be helpful to think about three stages of transition.
1. Introductionory/planning stage (approximately age 12-14 years)
2. Preparation stage (approximately 14-16 years)
3. Transfer stage (approximately 16-18 years)

Although we’ve suggested ages to start each stage, when they start depends on you and what’s going on in your life. We give more suggestions about what to do during each stage below.

Learn about your condition

Understanding your cerebral palsy can help you take better care of yourself and be more involved in decisions about your healthcare. You should consider completing a health summary that you can take with you when you attend adult health services. Ask your parents or guardians and your health professionals questions about your cerebral palsy, your medical history, medications and treatments you received or still receive, and equipment that you use. They can help you to complete your health summary. You may also find it helpful to ask your doctor or other health professional for a written summary of your cerebral palsy.

It is useful to know proper terms to describe your cerebral palsy, for example the type of cerebral palsy you have, so you feel more confident talking about your cerebral palsy with new health professionals. Knowing how your cerebral palsy might change or affect you as you get older might also help you decide when to seek health and support services as an adult. You can find information about cerebral palsy here, and information about ageing with cerebral palsy here.

Becoming independent

Becoming more independent is a natural part of life and happens at different stages for different people. As you achieve more independence and understand your responsibilities, you should be included in decisions that are made about your health care. During transition, you will work towards greater independence and ownership of your health care as appropriate and to the best of your ability. Part of this preparation will include you becoming more involved in managing your health care yourself and do many more things for yourself, if you are not doing this already. These may include making appointments, speaking to your health professional during appointments, and getting prescriptions filled.

As you feel more comfortable, you might spend some time at each clinic appointment talking to your health professional on your own. Tell your parents and your health professional if there are specific skills you want to practice, for example, saying your medical history or answering questions. Talking to your health professionals may be hard at first, but with practice it gets easier.

It is important to talk to your parents about how and when you want to take on more responsibility for your health care. Decide on the role you want your parents to play in your health care. For example, you might want your parents in appointments only to remind you in case you forget something. Or maybe you do not want your parents to say anything at all. Maybe you still want your parent to have a very active role in your health care. Sometimes you and your parents won’t agree about your health care. If you disagree about anything relating to your health care, it is important to work out these issues. Early on in the process of transition, talk to your parents about what role you would like them to take in health care and at appointments. The role you want your parents to play in your health care will also likely change over time, so have regular conversations about this with them.

Knowing about services and supports in children’s and adults’ health services

When you are in children’s services, you should learn the names of doctors and other health professionals you see and the reasons you see them. Write this information down and keep it in the one place.

Most young people with cerebral palsy will transfer from children’s services when they turn 18. Some young people may transfer before they turn 18 or some may stay a little longer. Some will transfer when they have completed school. The timing of your transfer may depend on several things such as the policy of the service and the current status of your condition. You may also transfer from different services that you attend at different times. You should talk with your parents or guardians and members of your health care team about when you can expect to make the move from each service you attend.

You may not see the same health professionals when you’re an adult as you do as a child or you may not see them as regularly. Discuss the potential differences between children’s and adults’ health services, and changes in processes and expectations, with your health professionals before you leave children’s services.

You may not see the same health professionals when you’re an adult as you do as a child or you may not see them as regularly.

Your health professionals in children’s services should send a referral letter to your new adult service(s) and/or your GP. You may have a group meeting with your child health team or health professionals before you move. This may include professionals from the new service(s) you will attend as an adult.

You may find it helpful to:

• Work with your children’s health services to decide what information needs to be given to the adult health professionals
• Ask if your file or a copy of your medical records will be transferred.
• Request a copy of referral or discharge letters that are sent to new providers.
• Request your complete medical
• Get the contact details and information about any new service(s) you are attending as an adult before you transfer.
• Find out if you will have to make the first appointment with your new service(s) and when you should do this

Learn about community services and supports for adults with cerebral palsy. Ask your doctor and other health professionals for resources that might be helpful to you. Identify both formal and informal advocacy services and supports, which may help you to be as independent as possible, such as the National Advocacy Service. You can also find useful resources online, such as this site, of course.

Looking after health equipment

As an adult, you will be responsible for looking after your own health equipment and assistive devices. This includes:
– Cleaning it regularly
– Checking it for damage
– Knowing who to contact if it needs to be fixed or replaced

Before you leave children’s services, you should find out about the equipment and the equipment you might need to use in the future. Some questions you might ask your parents and/or health professionals are:
– The name of the equipment you use
– How to order it and from where
– How long it usually takes to arrive
– Who pays for it
– When your equipment needs to be replaced
– Who to contact if you need new or replacement equipment

Managing appointments

It is important to learn how to manage your appointments and work with your doctor or other health professionals.

Here are some tips for managing your appointments:
– Before you go to an appointment, plan ahead and know what you need to take to the appointment.
– If you cannot make an appointment, then phone and cancel or reschedule your appointment.
– To help you remember appointments, enter them into your phone calendar and set reminder alerts if you have a phone
– Keep track of the names of your healthcare team.
– Keep phone numbers for your doctor and other health professionals in your phone contacts or in a notebook.
– Keep information about your medication with you. It can be helpful to have a photo of the label of your medication, if any, in your phone.
– Bring a support person such as family member or friend if you would like support. You can ask them to wait outside if you want to discuss something personal with your health professional.
– Think about how you will get there and plan your route in advance
– Give yourself enough travel time
– Check the building access and parking and let them know if you need help with access
– Write down your concerns and questions ahead of time
– Bring any relevant equipment you use with you.
– You may want to bring paper and pencil to take notes to read later, or you may record notes in your phone or ask the person who is supporting you to take notes.

When you see the health care team, talk to them and know that you can ask questions if you want to. You know best about your health and don’t be afraid to speak up. Write down questions before going to an appointment. Practice introducing yourself and asking questions with a parent, friend or someone else you trust if it makes you feel more confident.

When you finish your appointment, you may be expected to make another appointment. To know what is expected of you, ask when you need to see the professional again and how far in advance you need to call for an appointment.

Meeting new health professionals

It might take time to build a relationship with a new professional and they might not be an expert in cerebral palsy. Be open and honest and tell your new professional(s) everything. You are an expert on your health, so the more information you give them the better they can meet your needs

If it is your first appointment with a new health professional you might want to write a short summary of your condition, including past and present treatments and medications, to share with the health professional. You might also want to think about any goals you want to achieve that your professional may be able to help you with in advance of the first appointment. You can share these with the professional when you first meet them.

Staying healthy

Looking after your health is very important so you can do the things in life that you want to do. It is often about making some good choices about the things you do every day. You should talk to your children’s health care team about your individual circumstances and learn about when you should seek services or supports as an adult.

To take care of your health, it helps to be well-informed about your cerebral palsy. Ask your health professionals in children’s services what you can expect of your body, now and in the future. It might also help to read information about cerebral palsy and to talk to other people with cerebral palsy.

You should look after your mental health as well as your physical health.

Make a list of all the things you need to keep yourself healthy, such as being physically active, eating well, socialising, taking part in hobbies, working or going to school or college, and resting. By thinking about these, you can start to understand what positively and negatively effects your cerebral palsy and find a good balance between your condition and lifestyle.

You should look after your mental health as well as your physical health. Mental health is a term used to describe a healthy positive mental state where people feel like they can deal with problems in their life easily. Mental health problems occur when we feel like we are not able to deal with life’s problems easily. This is a very normal experience and everyone will find it difficult to deal with problems at some point in their lives. If you are struggling with your mental health it is important to speak to someone about your concerns to help you work through any emotions you are struggling with.

Read more about mental health.

Self-advocacy

Self-advocacy is a skill where you learn to speak up for yourself and let your doctor (or other health professionals) know your concerns and questions. Learning how to advocate for yourself is part of becoming an adult. Self-advocacy skills are important in health, just as they are in other parts of your life. Young adults who have been prepared to advocate for their needs and make their own decisions have more control over their quality of life.

Here are some tips that may help you to advocate for yourself:
– Learn how to explain your cerebral palsy clearly. Read this section for more information
– Practice speaking about your cerebral palsy with a parent, friend, or someone else you trust
– Stay calm and polite, but assert yourself to get the support or information you need
– Speak up if you don’t agree with your health professional. You are the boss of your own healthcare; no one knows your body better than you do.

We have created some resources to help you be your own medical advocate, find them here.

Developing a relationship with your GP

A GP helps to manage new (non-emergency) or ongoing conditions or general health concerns. GPs have general knowledge about a range of different medical issues and provide care for many different health problems in all age groups. Some GPs have particular interest or expertise in certain health conditions.

Your GP is usually the first health professional to contact if you are unwell (in non-emergency cases). Your GP is also usually the point of contact between you and health professionals in the hospital or community. Your GP can communicate with specialists, refer you to other health professionals such as physiotherapists, and link you to other supports, if this is what you need.

It is important to have a regular GP who you trust and feel comfortable with because your GP will help you manage your healthcare. It is particularly important to have a good relationship with your GP when you have cerebral palsy because you may be transferred from child services to your GP, rather than a specific adult service. Having a good relationship with them may help you feel more comfortable to talk openly and ask questions about your health needs and personal issues. Consider making an appointment with your GP before you transfer from child services so they can get to know you and understand your needs.

To help update your GP about new research regarding Cerebral Palsy we have information on our website that you can let your GP know about.

Finding a new GP

If you don’t have a GP or if you are moving to a new area, it’s a good idea to start thinking about finding one. To help you find a GP you can:

• Ask family, friends, neighbours or school contacts for recommendations
• Ask your current health professionals for recommendations
• Ask other adults who have CP

When picking a GP, you might also want to:
• Ask about accessibility needs if applicable. Will you be able to physically access the building’s car park, walkways, entrance, hallways, bathrooms, waiting area, exam rooms and exam tables? Is there a ramp, lift or stairs? Is there any special equipment like grab bars or a hoist? Can the office provide accommodations such as extra time, assistance with transfers or waiting in a quiet area rather than the busy waiting room? What other accessibility features would be helpful for you?
• Ask if you can you make a longer appointment if necessary
• Ask about opening hours and waiting times
• Ask questions about a GP’s expertise, interests, extra qualifications