Planning for transfer

Adult services may be different from services you get when you are a child. As a child, many of your health professionals
might have been in one place. In adult healthcare, your health professionals may be at different locations and may not be organised as a team. As a child, a paediatrician (a children’s doctor) might have co-ordinated your care. As an adult, you may not have a doctor or other health professional who you regularly see about your cerebral palsy and who co-ordinates your care.

If you notice any changes in your condition or any problems such as pain, you should go to your GP for advice. Your GP may then refer you to a relevant health professional such as a medical specialist or surgeon, a physiotherapist or an occupational therapist. It is important to seek advice as soon as you notice any problems, as waiting times for appointments can be long. Don’t “wait and see”.

Importantly, when you see a doctor or health professional as an adult, you should be the focus. Even if you do not change doctors, the way in which the doctor interacts with you should change. You will be expected to manage more of your own healthcare. Doctors and other health professionals should talk directly to you rather than talking to your parents.

When you leave child services, you may be expected to:

  • Know when and how to access help
  • Speak up about what you want
  • Manage appointments to see health professionals
  • Talk to health professionals during appointments
  • Set goals for what you want to achieve from your health services
  • Be motivated and take action to stay healthy and well
  • Know about your cerebral palsy and medical history
  • Know about any medication and other treatments you receive
  • Know about the equipment you use

 

You can find more information about the differences between child and adult health services in a table on the Resources page. Discuss the potential differences between child and adult health services with your health professionals before you leave child services. You might find it useful to use this table to identify any questions about changes to expect when you move to adult health services.

Knowing about services and supports in adult health services

You should talk with your parents and health professionals about when you can expect to be discharged from each children’s service you attend. When you leave child services, you may be referred to an adult healthcare team and/or your GP.

If you are referred to an adult healthcare team, the decision about where you move to is often made by your children’s healthcare team. It can often be limited to services within the area that you live. However, sometimes you may be able to choose which adult service you go to. Explore your choice of adult service providers with help from your parents and others involved in your care. As you start to think about and prepare to transfer, ask your doctor and other health professionals about the different adult services that are available to you, and get their help to link into these services.

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 education or training services. Some young people will need to plan for respite, personal care and personal assistant services in adulthood. You can find information about day services on the HSE website.

Your health professionals in children’s services should send a referral letter, report or other information to your new adult service(s) and/or your GP. You may have a group meeting with your children’s healthcare team 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 record
  • 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

 

It is helpful to keep all of the information about your condition in one place such as a ring binder file that you can easily find in the future.

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. Organisations that provide trusted information about cerebral palsy online include:

  • American Academy of Cerebral Palsy and Developmental Medicine
  • European Academy of Childhood Disability
  • CP Alliance
  • Cerebral Palsy Foundation
  • UP – the Adult Cerebral Palsy Movement

 

>> Go to next page “My cerebral palsy and health”