In Brain News

There are over 500 families impacted by a childhood brain tumour diagnosis every year, with many children living with complex conditions and late effects from childhood through to adulthood.

 

The Ready Steady Go programme has been developed by Southampton Children’s Hospital to support teenagers, parents and caregivers to be in control of what information they receive from their healthcare team but also to support the transition into adult services from children services.

 

Hello to children’s services

When your child has a long term condition it can be stressful, overwhelming and can cause anxiety. Southampton Children’s Hospital have developed this programme to support parents or caregivers when their child has been diagnosed with a long term condition.

 

 

 

 

The introduction leaflet can be read online. Some key points mentioned were:

  • How the healthcare team can help you manage your child’s condition
  • What questions you should ask. The 3 main questions mentioned are:
    • What are the options for my child?
    • What are the pros and cons of each option for my child?
    • How do I get support to help make a decision that is right for my child?

You can read and print the full leaflet online here. You can also access the Ready Steady Go  questionnaires on their website here. Each questionnaire is developed so that you are prepared with all the necessary information and feel informed about the decision process.

Transition to adult care

When you are diagnosed with a brain tumour as a child, there will come a time when you will have to transition into adult care from the children’s services. The transitioning process should be a gradual process that gives young people, parents and everyone involved in their care, time to get ready to move to adult services.

Moving away from a team of doctors and nurse you have seen for years can be a daunting for everyone involved but hopefully with this bit of information, you can feel more prepared and confident about the move. The transition process includes deciding which services are best for you and where you will receive care.

The Ready Steady Go programme is here to help you during this transition process.  This programme is for anyone over the age of 11 with a  long-term condition.

Some key points we collated from the Transition: moving into adult care leaflet are:

  • You need to move into adult services because some of you care needs may not be available under the children’s services
  • There is no exact time or age to move into adult services. Your doctors and nurses will have an idea when they feel you may be ready but it is important you are ready and involved in the decision process
  • You may well be able to choose where you could have your adult care dependent on the services you need
  • Your current healthcare team can help you plan your transition
  • Your family and carers have played a big role in your care, talk to them and they will be able to give lots of helpful advice. You parents or carers may well play a big role during your transition process and long after, talk to them and your healthcare team because to feel supported

You can read the full introduction leaflet online here.

Other useful documents for this programme are:

Hello to adult services 

 

Transitioning into adult services can be scary and this information guide is developed to ensure you feel confident for this change and have the knowledge about your condition. Have  read of the following guides learn more:

There are also some questionnaires available for you to download online here.

You can also watch this video where patients and staff from Southampton Children’s Hospital talk a about the Ready Steady Go programme.

If you would like to use the Ready Steady Go transition programme in your hospital, please contact Dr Arvind Nagra, consultant paediatric nephrologist and clinical lead for transitional care on ReadySteadyGo@uhs.nhs.uk

For healthcare professionals

If you would like to use the Ready Steady Go transition programme in your hospital, please contact Dr Arvind Nagra, consultant paediatric nephrologist and clinical lead for transitional care on ReadySteadyGo@uhs.nhs.uk

Healthcare professionals can download existing information about the plan online here.

If you want to talk about any of the information mentioned above, please get in contact with our Support Specialist for Children and Families Khadijha.