Expert Parent Programme Toolkit

Written by Council for Disabled ChildrenDate 01 Feb 2019

This toolkit has been developed as part of the Expert Parent Programme to enable parents to find further information or to be able to deliver aspects of the training to other groups of parents.

The toolkit includes short activities that don’t need any formal training to deliver them. They are three core activities from the Expert Parent Programme workshop that can be transposed to any number of different settings or occasions such as support group meetings, Parent Carer Forum events and perhaps in small condition-specific groups as a way of getting to all know each other.

All are written with the explicit expectation that this will be peer-led by parent carers who will model all activities and share their own child’s stories, so the context is always ‘our child, our expectations or concerns’ not ‘your child, your expectations or concerns.’ This has proved to be a fundamental of this programme and a key to its success.


  • Appointment or Disappointment?  - a group information sharing exercise to identify top tips when going with your child to an appointment with any health professional 
  • My Child – looking at how we think and talk about our disabled child and the surrounding jargon around Special Educational Needs and Disability
  • How Many Hats? -  a confidence building exercise looking at the many roles parent carers take on and the skills and knowledge they possess often without realising it
  • Expert Parent Programme Group Agreement - this can be adapted to fit local context and read out before any activity so all participants feel comfortable.

Additional resources

  • Levels of Care in the NHS - This is a guide to how the NHS organises its care, some of the health professionals that may work with your child, how they are typically accessed and how they fit together in the wider system.
  • Expert Parent Practical Tips for Using the NHS: This first guide is about building a good working relationship with your GP. GPs play a key role in the health system and Contact a Family has produced a useful poster that explains the important role a GP plays in the health care of disabled children.
  • Expert Parent Top Tips for Health Appointments: This second guide gives practical advice for getting the best out of your child's appointments with health professionals.
  • Get Your Rights: understanding children’s rights in the NHS
  • Cerebra’s Problem Solving Toolkit: family friendly guide to support those who are encountering difficulties with the statutory agencies in relation to the provision of health, social care and education support services.
  • Health, Functioning and Wellbeing Summary: This Health and Wellbeing Summary Form can be used to inform a child's doctor before an appointment of issues that a family would like to raise.
  • Making Conversations Count in Health, Social Care and Education: Developed by NHS England, this resource is for parents and carers of children and young people with a learning disability and/or autism. It explains how to effectively make complaints and give feedback to services across education, health and care.
  • Complex Health Needs and Transition to Adulthood: These are a suite of resource lists and links for families and professionals. 

If you want to find out more about the full Expert Parent Programme, including the face-to-face training and online learning, please follow the links below.

Please note: The term disabled child is used in this workshop and in these activities but if you wish to use another term please do feel free to adapt and change this to fit your needs.