Video transcript
I hope that by involving people with lived experience in future guidelines, we’ll continue to make sure that they’re person-centred, that they're focused on what's going to make a practical difference to peoples’ lives, because ultimately it's not a theoretical exercise, and it's got to be something that can be implemented and that is going to make a difference to people. Hi, I'm Michelle Law. I have lived with type 1 diabetes for 18 years. I also write the blog Pumps & Pricks, which I started out in 2018 to write about my experiences of living with diabetes, in particular my diabetes burnout at that time. And I've moved on to talking a bit more about my experiences with diabetes technology, and how that has helped to ease the burden of living with diabetes. As well as that, I’m also involved in the Exeter Diabetes PPI group which meets every quarter to review research funding applications and give a lived experience perspective on those. And I've also been a #dedoc° voice which has given me the opportunity to go to diabetes conferences around the world over the last few years. I was invited to be part of the Guideline Development Panel for EASD's first clinical guideline on the assessment and management of diabetes distress, and I've been involved in that project for two years. So I bring a lived experience perspective with type 1, working with a colleague who brings lived experience with type 2. And the two of us, as lived experience representatives, work alongside all the other experts on the Guideline Development Panel who bring clinical, and academic, and methodological experience to the group. It was really interesting being involved in the Guideline Development Panel as a non-researcher and non-medic because it gave an insight into the work that they do and the process of putting a guideline together, understanding a bit more about research methodology and how research quality is assessed. I learnt a lot from them, but I wouldn't say I felt in any way at a disadvantage for not having those backgrounds, because I bring my own expertise to the group, and I've been chosen to be part of the Guideline Development Panel because I do bring something different, and I felt that we were treated as equals around the table and in the discussions. We've been to every single meeting over that over the two year period. So we met on a fortnightly basis. We had one-hour calls at eigth o’clock on a Monday morning every two weeks. And then we had two off-site meetings in Düsseldorf as we were nearing the end of the work and getting ready for publication. We have also had the opportunity to come along and present at EASD, so that we can talk about the guideline and be involved in conversations around it. We were quite integral, I think, in the discussions around the clinical questions that we wanted to answer as part of the work. and I know that some of the points that were made during our discussions have very much been brought to the fore, and so one example that I like is that there's a specific emphasis in the good practice statements around the need for there to be a conversation around an assessment score. I really made the point that it's not enough to just have that as a tick box item. It's got to be included as part of the discussion with the person with diabetes. Whether that person is experiencing high levels of diabetes distress or not, it's really important to acknowledge the fact that they've taken the time to think about how they feel and to fill that information in. It's it's really important that that's just not dismissed because that can add to feelings of distress if that's not carefully managed. I hope that by involving people with lived experience in future guidelines, we'll continue to make sure that they're person-centred, that they're focused on what's going to make a practical difference to peoples’ lives, because ultimately it's not a theoretical exercise or something that is for the sake of doing it on its own. It's got to be something that can be implemented and that is going to make a difference to people. Otherwise, it's a document that gets filed on a shelf alongside other documents that doesn't make its way into peoples’ lives. So three reasons why it's great to be involved in a Guideline Development Panel are that you get to meet some of the world experts in the field in an area that you're really interested in. You have an opportunity to get your name out there as someone who's interested and passionate about this particular topic. And you will learn loads. So you have an opportunity to listen in to conversations that you would never have an opportunity to listen to in any other forum. So for those reasons, I’d highly recommend being involved.