The Leading Together Programme was developed by Oxford Academic Health Science Network to involve members of the public in developing health services and allow professionals to learn from the people who use the services.

A pilot version of the programme was launched in 2018 and it focused on learning disability services. A group of health and social care professionals from Oxford Health and Oxfordshire County Council joined five people with a learning disability to learn together.

The course was delivered by TPC Health in partnership with Oxford Health and My Life, My Choice, a self-advocacy organisation for people with a learning disability. Among Oxford Health’s participants were Director of Corporate Affairs Kerry Rogers, then Chief Operating Office Dominic Hardisty and Patient Experience Lead Rachel Miller. They were joined by Ben McCay, Shaun Picken, Dawn Wiltshire, Gina and other experts by experience from My Life My Choice.

The participants graduated in November 2018, and since then the experts have worked with Oxford Health as consultants. Dawn in fact was one of the trainers rather than a trainee on the initial course; she was invited to join the Leading Together group as a result of that.

Campaign for LD voice in decision making

So, what has been the biggest Leading Together achievement to date? The answer comes quickly:

“Getting Ben elected a governor!”

This refers to Ben McKay who stood as a candidate and got elected as a governor in Oxford Health’s Council of Governors’ election this spring.

Leading Together co-production team members have given written feedback on the meetings they have attended – in easy read, of course!

The Leading Together experts have a reason to be proud: they worked for more than two years to make the Trust governance, membership, meetings and papers easier to understand – not just for themselves but for everyone.

The group helped the Trust develop easy read membership information and attended Council of Governors’ meetings, giving feedback about their experience. As a result, Oxford Health now provides easy read agendas for Board and Council of Governors’ meetings and is in the process of developing easy read versions of other papers, too.

Last but not least, the Leading Together advocates rallied around their friends to recruit new members to the Trust, encouraging them to vote for Ben.

“We want to carry on recruiting more members with a learning disability,” says Ben. “It will be just a lot easier when we can actually meet up in real life!”

You can read Ben’s interview here

Evaluating Evenlode

The Leading Together group is taking an active role in evaluating services and looking what can be improved. Ben and another member of the group developed a toolkit to evaluate the Evenlode medium secure unit which provides care for people with a learning disability.

Dawn Wiltshire explains:

“The toolkit is a quality check list, all in easy read. We can use it to find out what a place is like for people with a learning disability – or any disability”

Ben adds:

“It asks questions from patients and staff, for instance, what kind of activities they have on the ward, what the food is like, what the rooms are like. At Evenlode a patient showed us around so we could have a look.”

Patient experience lead Rachel Miller says that the Leading Together group will evaluate and develop the tool further once Covid restrictions ease.

“If the tool proves successful and useful, we aim to adapt it for evaluating other settings, for innstance our community hospitals.”

Ben and his project companion are proud of the work they did at Evenlode, but also found it quite challenging. Ben felt the environment made him anxious and the team would have needed more time with staff and patients for their evaluation. On the other hand, Ben exclaims:

“I wouldn’t have wanted to spend any more time there!”

However, things may have changed since their first visit. Rachel Miller explains:

”Since we visited Evenlode to try out our tool, the unit has undergone some refurbishment work and a new sensory room has been built. So, it will be interesting to see the impact of these changes when we are able to review the unit again.”

Helping others is the best

But what’s best about being involved in the Leading Together group?

“Knowing that I am making a difference, giving something back and helping people with a learning disability to improve their lives,” says Ben.

His friend says:

“Making sure that people with a learning disability get the right equipment and right medication and are not over-medicated.”

And Dawn adds:

“Making sure that people can get the things they need.”

And finally, the Leading Together Group quite enjoys teaching staff how to do things better. All members have been actively involved in the production of a new training video on learning disability awareness. It will become part of the Oxford Health’s induction for new staff. At the time of our meeting, the video was being edited and the feeling in the group was: “We are desperate to see it!”

Some of the images in this article are by Photosymbols.