Expert Parent Programme

The Expert Parent Programme began in 2014, supported by research led by the Every Disabled Child Matters campaign which found that parents and carers of disabled children faced numerous barriers in accessing health services and struggled to navigate the health system.

Developed with funding support from the Department of Health (now called Department of Health and Care), from NHS England, and Health Education England, the Expert Parent Programme drew on evidence of the positive impact of parent-led training and empowers parents of disabled children and young people to become more confident and resilient when engaging with health services, and the other services that they come across.

What is it?

The Expert Parent Programme is unique in that it maps out the current health system specifically to the needs of children and young people with special needs or disabilities (diagnosed or un-diagnosed). Through a combination of face-to-face sessions, online modules and web-based resources the programme enables parent carers to better understand and navigate the health system. It provides them with knowledge, practical tools and suggestions to increase confidence when meeting professionals – with the aim of enabling them to access and make the most of the system and to ensure the best outcomes for their children and young people.

  • Face-to-Face Training: Central to the Expert Training Programme is the Expert Parent Training Course, a 4-hour training session delivered by experienced parent trainers that develops parents’ knowledge and confidence when dealing with the health system. There is currently one pan-disability or generic workshop, and three bespoke versions.
  • New Expert Parent Programme: The new programme will include information and tools to introduce parent carers to adult services and support them in preparing for their child’s transition.
  • E-learning Modules: The face-to-face training is supported by 6 e-learning modules including one on personal health budgets, another on how the NHS is structured, and several others with new modules being developed later in 2019.
  • Toolkit of Online Resources: Parents can also access a range of online resources including practical guides to working with health professionals and some downloadable ‘off the shelf’ activities from the Expert Parent workshop itself. 

I definitely feel more confident, the workshop was very empowering and I’ve made good use of the tools I took away.

Parent carer, workshop attendee