The Expert Parent Programme (EPP) is an evaluated peer-led programme of support for parents of children with complex needs to enable management of their conditions and effective use of the various systems they encounter. The programme includes a workshop delivered by parent trainers to parents, complemented by online resources.
The programme consists of:
- A workshop for parents and carers of disabled children and young people, delivered by parents. This peer-to-peer support is the fundamental tenet of the programme;
- A network of CDC approved parent trainers;
- Comprehensive online information and links to existing information;
- Interactive e-learning resources.
The workshop consists of a ‘four hour off the shelf’ package that can be delivered over an entire 4 hour session or as short ‘one off’ activities as part of a support group meeting, coffee morning or conference workshop.
The workshop covers:
- Module 1: Person centred approaches; parent carers’ unique knowledge of their child
- Module 2: Understanding the health system; who’s who and how do they help; outcomes in detail; needs vs rights
- Module 3: How to work effectively with and get the most out of the health system; how to give feedback or complain; effective partnerships
Expansion of this programme would be through training local parents to deliver the workshop to local groups of parents, creating a sustainable network of trainers, and maximising long term impact.
Disabled children and young people, and those with complex needs often experience uncoordinated care, and poorer health outcomes than their peers. The EPP helps their parent carers to have solution-focused conversations with health professionals, and to articulate the impact of care of their child’s outcomes. This helps ensure effective, appropriate care based on choice and control.
EPP was developed as a pan-disability programme, and different versions have been created to address particular NHS priorities and system pinch-points, for example for parents of children and young people with learning disabilities and challenging behaviour and/or autism, or those accessing or waiting for CAHMS.
The programme was established in 2012, and an evaluation found that following the programme, 92% of parents asked agreed that the training had helped them to understand how their use of language and terminology when talking about their child can help professionals get a clearer understanding of their child and how best to meet their needs.
The capacity building nature of the programme ensures that beyond an initial investment, a sustainable network of trainers will be able to work locally to deliver the programme, adapted to suit local needs and services. To deliver across all STP footprints, it is estimated that the EPP would cost £350,000.
This case study was first published in the People and Communities Board's 'A new relationship with people and communities' report.