What we did

In developing a new Strategic Commissioning Plan (SCP) for Adult Health and Social Care, Dumfries & Galloway Integration Joint Board was keen to help people understand the content of the plan and to engage with the local community as part of the consultation process. To make the plan as accessible as possible, we wanted to involve people in producing an Easy Read version.

We formed a working group made up of people from Powerful Voices Together (PVT), a local group with varying abilities and lived experience of learning disabilities. Some support workers helped to facilitate the process and assist with technology where needed. The group members were asked to review the plan and and advise on the following:

• what should be left in
• what to remove
• what was confusing

We met online using MS Teams which the PVT group members were familiar with.  As well as discussing the plan, there was a learning opportunity for us in using MS Teams. An example of this was when people left their mics on after they had spoken, we had to mute them to improve the sound quality.

We produced hard copies of the consultation documents to give people time to consider the information before the meetings and provided pre-paid envelopes to the group members, allowing people to submit any comments in advance. A draft of the Easy Read version was the starting point for the group to edit. Members suggested their preferred wording and images and could comment during the meeting or take the information away and come back with their thoughts at a later point.

What worked well

One unforeseen advantage of COVID-19 restrictions was being able to meet online. In sharing hard copies of the document by post, this allowed the group to get the views of a geographically spread out and diverse range of people. There were also advantages in working with an existing group. Powerful Voices Together was already active with relevant experience and knowledge and their volunteers were eager to share their thoughts. Their enthusiasm played a huge part in how they helped develop the document while enjoying problem solving as they went along.  

The participants felt appreciated, respected, involved, and included, and said that they liked seeing and connecting with people adding that it reduced feelings of isolation. The support workers also enjoyed the process as it was something new and different in their role. They liked the manner in which the group were engaged, which they felt was respectful. The support workers were grateful for the input, experience, and knowledge of the group members. A member of the working group commented that they “liked that [they] could see the changes that [they had] suggested”

Other things the group members told us were important to them included:

• being meaningfully involved in developing an Easy Read version of the Strategic Commissioning Plan
• having their voices heard and views respected
• not being patronised – using language and information in a way that was easily understood but not watered down so that it loses its meaning

The impact of including the views of working group members was significant in influencing the Easy Read version content and format, and their contributions were refreshing as they brought new ideas and good suggestions. As a test of change for Dumfries & Galloway, involving people with additional support needs in this process (including paying for support workers' time) has been successful and will provide future learning for other new projects. Another first for the group was when a PVT volunteer recorded a voiceover for the supporting video, a great example of co-producing the resource. The volunteer said that they "really liked the acknowledgement of the PVT on the videos and documents."

Challenges/what could have gone better

Things we would have done differently and what we have learned for the future include:

• establishing a working group earlier in the process
• having regular meetings in the diary so people have more opportunities to input
• using images of local people and places in the document so that it feels like ‘their’ plan

Participants can some useful feedback about the process:

• virtual communication is not suitable for everyone
• we need to ensure people are aware that they don’t need to have their camera on for meetings
• they could do with a bit more time to think and consider the documents – it still felt a bit rushed

Key learning points

It remains very challenging to find a meaningful way of including people with profound and multiple disabilities in discussions. Using existing groups like Powerful Voices Together, who have both knowledge and experience shows that members who are familiar with each other and enthusiastic, can meaningfully contribute to making positive changes to health care.

It does takes a lot of time and resources to create a really good Easy Read document, including finding the right words, layout, balance of information and images. As a group, we have been successful in producing this piece of work and our shared learning includes:

• ask for volunteers before the start of the project and keep the numbers small so the group is manageable
• get finance in place to pay support workers so that people can fully engage 
• give people the information in advance to consider
• give people the necessary time to feed back