Early last year the HSE launched the updated National Consent Policy. Since then the Easy to Read version of the policy has been updated and is available on hse.ie/nationalconsentpolicy.  Setting out to promote the new resource, a team headed by Elaine McCaughley, Programme Lead, considered several options:

“We wanted to demonstrate the practical benefits of making information accessible, and bring the Easy to Read Consent Policy document to life. With this in mind I approached St Michael’s House in Dublin. They provide a comprehensive range of services and supports to men, women, and children with disabilities. We wanted to try to find out what service users thought of the Easy to Read resource, whether it is useful to them, and to hear their thoughts on consent in health and social care.”

For the individuals supported by St Michael's House and staff, the invitation to support the launch was very welcome. According to Roisin O’Neill, Quality and Risk Manager at St Michael’s House, “supporting individuals with intellectual disabilities to explore a topic such as consent, and decision-making, can be a daunting task for many staff. All too often the lack of available resources or accessible material can impact on getting the conversation started.

“Within St Michael's House we often find that we are constantly trying to adapt and develop information into a format that makes sense to the people we support. Past experience had been that when policies are updated, despite having a real impact on the lives of those we support, there were no accessible format or resources available. As a service, we work to develop resources that will support individuals to understand the concepts and to begin discussions about what this might look like in their life.”

Roisin continued: “Beyond the life of this project, we really wanted to support the conversation across the organisation, and for the individuals supported to be the ones to lead this conversation. And so began the idea of a peer-to-peer workshop. While we held the workshop event on 31 July, preparations began back in May.

“A group of five individuals supported by staff met weekly to consider the Easy to Read Consent Policy and explore ways that we could use the document to strengthen understanding about consent and decision-making. The highlight for us of being involved in such a project is the shared learning for all.

“When thinking about what consent is, and other words that can be useful to explain consent, one of the individuals Ciara explained it so well when she said consent means asking somebody is it ok? During the peer-to-peer event that was held on 31 July, there was ample opportunity for us to demonstrate consent in action. Prior to the event, we needed to check if those who attended the event consented to having photos and videos taken on the day. The individuals developed an easy read consent form for the day.

“On the day of the workshop, there was an array of examples of how people are supported to understand information by staff who know the individuals well. They used everyday examples that were important to each individual service user, showing the many ways that they can give or refuse consent, and a variety of communication tools that individuals use to engage and be heard beyond the traditional spoken word.”

Roisin concluded that “having a policy in an easy read format is one piece of the puzzle, a useful one that we can refer to on a regular basis to start conversations and influence practice as we uphold the rights of those supported across the disability service.”

Watch services users and staff at St Michael’s House on YouTube.com