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.

The programme was developed by our specialist member group, the Council for Disabled Children, with funding from the Department of Health. It draws 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.

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 disabilities. Through a combination of face-to-face sessions, online modules and web based resources the programme enables parent carers to better understand the health system and provides them with practical tools on how to access it 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.

• E-learning Modules: The face-to-face training is supported by 3 e-learning modules that explains more about personal health budgets, how the NHS is structured, and how to constructively give feedback.

• Toolkit of Online Resources: Parents can also access a range of online resources including practical guides to working with health professionals and information on specific health conditions.

Building upon the success of the Expert Patient Programme, the programme adopted a similar peer-led approach to developing the project and was informed and piloted at each stage by parents from across England.

Starting with a core team of lead parent trainers the programme delivered over 50 events across England’s training over 450 parent carers. Parents who completed the training session were offered training for trainer workshops to allow them to deliver the workshop locally.

This peer-to-peer, train the trainer approach proved an incredible success. By using their own experiences in their training style, parent trainers have been able to put participants at ease, help them feel comfortable and more able to learn. Through a shared understanding and common background, participants have been able to relate to trainers and share experiences without fear that they will be misunderstood or criticised.

With a growing bank of expert parent trainers available to deliver the training locally the programme went on to develop a series of ‘off-the-shelf’ online resources and activities that individuals, support groups and parent carer forums could use informally, including a series of e-learning modules for parent carers who can’t attend the face-to-face training.

Where are we now?

The Expert Parent Programme has delivered over 50 training events across England attended by over 450 parents, these numbers continue to grow. Over 60 parents completed the training for trainers workshop and continue to promote the programme and deliver training to parents on request. The bank of trainer consists of both parent consultants who have been involved in the project from the outset and parents who have completed training for trainers which has allowed them to deliver the training locally.

By empowering parents to advocate on behalf of their children, the programme has allowed participants to have more effective and efficient interactions with health practitioners saving time and ensuring an enhanced experience for both family and service.

This year we've extended the programme content to look at services provided under the Children and Adolescent Mental HEalth Services (CAMHS). If you'd like to book on this training or take advantage of the resources developed through the course of this proejct please visit the Council for Disabled Children's website here.