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.

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 four bespoke versions.
• New Expert Parent Programme: The new programme includes 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 a range of e-learning modules.
• 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. 

Building upon the success of the NHS’s 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.

Some of these trainers are listed on the CDC website and are available to commission to deliver the range of workshops, whilst many others deliver some or all of the modules and activities locally within their own support groups, schools or parent carer forums.

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- bringing alive the concept of ‘making every contact count’.

The programme continues to develop in response to feedback from local groups and the parent training team.