Why shouldn't someone with dementia share their story?

It is core to our mission at Patient Opinion that we aim to make it safe and easy for everyone to share their experiences of their care, and make a difference.  And we are especially keen to make sure we hear from those “seldom heard voices” – people who are ignored, marginalised, or find it hard to speak up.

So we are very excited about our partnership with Talking Mats, a fellow social enterprise, with a mission to “help people organise thoughts and express views”. Thanks to encouragement and financial support from Life Changes Trust, we are busy working together to make it easier for people with dementia to share their views and experiences of care online.

The Talking Mats system is simple but powerful. It is centred around placing pictures on a mat to reflect both the issues that matter, and how you feel about them. And of course, in the process, to have a conversation about what matters, and why.

We want to make the Talking Mats approach available to people sharing their stories on Patient Opinion.

How far have we got?

The project team has spent time talking with people with dementia and their carers, to shape the set of pictures we need to provide. And we have worked with the very skilled and thoughtful team at Numiko to make it simple for people to add and position pictures to help tell their story, if they want to.

As we have gone along, we’ve been checking and testing the designs with people with dementia to make sure they are clear and usable. Here’s a sneak preview of part of the story-telling process. (Note: this is a draft design so it might change.)

What happens next?

The next step is to build these ideas into our live online service, so everyone can use them if they want. That’s a tricky job, but we aim to have it done by December.

In the new year, we’ll be testing the new Talking Mats system with patients and carers to make sure it is working the way we expect.

We’ll also be testing with staff in a range of health and social care settings. We plan to develop training and support resources to help staff understand the stories being shared, how to act on them, and how best to respond.

We might even have pictures in responses too: here's another preview of how this might work:

Why does this matter?

This work is hugely important to us at Patient Opinion. It directly supports our core mission. To our knowledge, it will be globally unique in extending the use of an online feedback platform for people with dementia. That will allow us to hear from people who traditionally have not had a say. We hope this work will also support the wider movement of people challenging stigma and changing attitudes towards those with dementia.

Overall, we anticipate that bringing the Talking Mats system into Patient Opinion will make it easier for many, many more people to “organise their thoughts and express their views”, helping health and care staff to learn from even more of the people they care for.

If you’d like to learn more about this project, feel free to post a response here, or get in touch directly.