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This section is all about appointments and conversations with health professionals. 

Do I have to explain what cerebral palsy is to a health professional? 

How do I plan for a new appointment?

What information do I need to bring along?

How can I make the most of my appointment time? 

Learning Objectives

By engaging with this section of the module, you will be able to:

1

Identify what information may be useful to share with healthcare professionals about your CP.

2

Describe how to plan for your appointments, including how to communicate your needs.

3

Demonstrate how to express your treatment goals and expectations clearly to new healthcare professionals.

4

Recognise some Health Summary forms that can help you during your appointments.

5

Describe your rights when getting healthcare and how to advocate for yourself.

Explaining your medical history to a health professional 

Some health professionals are very knowledgeable about CP, and some are not so familiar with CP. 

When preparing to see a new health professional, it can be useful to take a written summary of your diagnosis and other relevant health information with you. 

This might include some information such as: 

Your CP diagnosis (what type of CP you have)

Your specific needs e.g. “I need assistance with mobility during appointments, and I prefer to have my caregiver present to help communicate my needs.”

Any co-existing conditions such as epilepsy

Relevant health goals.

Relevant resources:  

What are the types of cerebral palsy? | Cerebral Palsy Alliance 
Types of cerebral palsy | Cerebral Palsy Guide 

Health summary for young adults with cerebral palsy 

You may already have a suitable summary of your medical history, for example given to you when you transitioned out of children’s health services, or from a recent hospital stay.

Depending on the health professional you visit and why, the summary might be very brief (e.g., a few sentences), or it may be very detailed. 

You may already have a health record available through My Health Record  

Explaining your CP to health professionals during appointments

Explaining my CP form

This Explaining my CP form was designed by the contributors of this module, to help you share important information with new health professionals.

It makes it easier to explain how CP affects your daily life, how you like to communicate during appointments, and what your health goals are. 

You can fill out this form and bring it to your appointment. It can help you remember key details about your health and make it easier for the health professional to understand your needs.  

Other useful medical forms  

The following two resources, both developed in the UK by UP The Adult Cerebral Palsy Movement, can also be helpful if you are visiting a new health professional. It can be used to summarise health issues related to your cerebral palsy. 

Health Summary Medical Form

This form is quite long, so you may want to complete it in stages over time.

You can choose the sections that are relevant to you or even create your own medical health summary based on it.

This record could be useful to keep for yourself or to share with a new health professional team.

Interactive Health Summary | UP The Adult CP Movement

Annual self-check summary form

This (attachment) could be used if you are preparing to visit a new GP who does not know you.

It can also be used as a ‘self-check’ to consider what health issues might be new or important for you to raise at a GP appointment.

Self Check Up | UP The Adult CP Movement

Sharing your treatment goals and plans 

Sometimes it can be difficult to ‘think on the spot’ about what you want to say. It might help for you to prepare some questions before you go to see the health care provider.  

This webpage can help you choose some questions to ask, particularly if you are worried or if you feel that you are not being heard. You can write the questions down or print off from the computer.  

You can also take a trusted person with you to your appointment to help you. 

Question Builder | HealthDirect 

As well as providing information about your medical history, it is important that you share your treatment goals and expectations, so everyone involved has a clear understanding of what you want to achieve, and everyone agrees to a treatment plan.

Some of the checklists above also have a space where you can write down what your goals and treatment expectations are. 

Ongoing care  

It is important that the healthcare you receive is right for you. 

It is okay to ask your healthcare provider questions about your healthcare. 

For example, you may have questions related to your symptoms or health problems. You may have questions about a test, or procedure. You may have questions about your treatment or medicines. 

Sometimes you may be concerned about the treatment you are having, how long it is taking to see improvement, or you may have concerns that your symptoms are not getting better.  

It is important to share these concerns with the health care professional that are treating you. 

They want to know if you are worried about your treatment or your health.

If you are worried about a health issue, even if it isn’t a big problem, this can sometimes lead to a health problem being recognised earlier rather than not telling your health professional about it.  

Concerned about your treatment?

If your health professional doesn’t know how to help, or says that there is nothing they can do, you can find another health professional that may be able to help you.

The next section outlines what your healthcare rights are.